2024 Meetings

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

What Happened at our June 11th Virtual Meeting

President Chloe Moody called the meeting to order at 7:05pm with 17 attendees plus a guest speaker.

Our guest speaker was Joyce Moss, RN, MSc Wound Healing and Tissue Repair, CWS, SWCN, COCN, with decades of experience in nursing and supporting and advocating for ostomates.  Her presentation was “Nutrition Guide for Ostomates – Common Ostomy Nutritional Concerns”, with an emphasis on blockages – causes, prevention and treatment.   Her presentation can be found here, and my notes are focused on the key points she emphasized.

Nutrition:

  • Know what you’re consuming – read labels and pay attention to nutrients
  • The body can produce 11 of the 20 amino acids to produce protein, but 9 essential amino acids must come from food
  • Carbohydrates (CHO) give the body, especially your brain, energy, and are metabolized into starches, sugars or fiber
  • Starches are a complex CHO, composed of a long chain of glucose
  • Sugars are a simple CHO, occurs naturally in milk, but most are added to foods
  • Fibers are also a complex CHO and can be soluble or insoluble.  Important difference – soluble dissolves in water and draws water into the gut to soften stool; insoluble does not dissolve in water and bulks up the stool.  Need a mix of both
  • Know your good fats (monounsaturated, polysaturated) and bad fats (trans fats)

Hydrations and UTI prevention:

  • Sip fluids– chugging water just washes out good nutrients from system
  • Caffeinated drinks, alcohol, high sugar fruit juices/sports drinks can cause dehydration
  • In hot weather and with heavy exercise drink electrolyte/oral hydration solutions
  • Try to consume foods high in natural electrolytes (calcium, potassium, magnesium)
  • Symptom of dehydration in elderly is confusion
  • Watch the color of your urine – darkening color is first sign of dehydration
  • Hydrate enough to keep urine a light yellow color and odorless; cloudy or dark urine, blood in urine, back kidney pain are all symptoms of UTI

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 printoutwith 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

Concern about Pouch Odor:

  • Practice good pouch hygiene, thoroughly cleaning outlet of any output
  • Be aware of odor producing foods, and use odor eliminating products inside pouch or take gas/feces odor controlling OTC meds (Chlorofresh and Devrom)
  • Raji adds salt and pepper to her buttermilk along with 1/8 tsp. asafoetida (aka “Hing”, used in Indian cooking)
  • Check with a friend, since you might be hypersensitive about odor that isn’t there

Preventing Abdominal Bloating:

  • Diet – avoid gas producing foods, eat slowly and chew thoroughly
  • Eat natural probiotics foods
  • Exercise regularly

Question about Vitamin B12 deficiency, which sometimes occurs with ileostomies and ileal conduits.  Can have blood test to determine if there is a deficiency.  Vit B12 supplements are poorly absorbed and nasal or injections are the best routes.  Nancy’s doctor recommended sublingual B12 drops and she has had good luck with Nature’s Bounty brand.

Derek has posted Joyce’s Nutrition Quick Resource Guide for Ostomates 2024 on the SVOSG website under Resources: https://svosg.nfshost.com/wp-content/uploads/2024/06/Ostomy-Nutrition-Quick-Resource-Guide-2024.pdf .  I recommend that you read this for additional information!

General Business:

  • SVOSG had a table at the 8thAnnual “Be Strong, Live Long Health and Wellness Fair” on Friday May 17, 10am-1pm at Fremont Park in Santa Clara.    Thank you, Steve E., for once again supporting SVOSG at the fair!  Linda Mazzie, Coloplast Rep., also joined Steve and I and it was time well spent, giving information to friends of ostomates and people in the health industry.
  • Several members have had medical issues arise, so let’s keep them in our thoughts for a successful outcome.
  • Big THANK YOU to Nancy L. for speaking to a person who was very apprehensive about upcoming ostomy surgery, and to Dave B. who connected her to Michael Gerald.  She was so grateful to be able to speak to you and Michael.
  • Topics for future meetings were solicited.  Suggestions were having a Convatec Rep speak and having regular round table sessions, so we can hear updates and concerns from our members.  Please feel free to send all your ideas to Joanne, Dave or Chloe.
  • Our next meeting on July 9 will feature Lori Dankers, TSA spokesperson, who will share tips on how TSA can make your next airline trip stress free.  Plan on attending this informative meeting!

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

What Happened at our May 14th Virtual Meeting

President Chloe Moody called the meeting to order at 7:05pm with 16 attendees
plus a guest speaker. It was great to see a few people we hadn’t seen in a while-
glad that you could zoom in!

Our guest speaker was Dr. Michael Gerald, who is a licensed Clinical Mental Health
Counselor (CMHC-Utah), Certified Rehabilitation Counselor (CRC), and professor at
Utah State University.

Michael started off by telling us about the annual Youth Rally, which is a week-long
onsite camp for ages 11 to 17 living with conditions that effect the bowel and
bladder systems, the goal of which is to promote self-confidence and independence
as well as making lasting friendships. This year it will be held at Univ. of Colorado-
Boulder July 8-13, 2024. Michael has been associated with Youth Rally since 1999,
first as a camper, then a counselor and now as an on-site resource counselor during
Rally. (SVOSG President Chloe and Michael met when they were both campers and
part of “The Misfits” – a Rally group that had unique medical conditions!) If you
would like to support a camper in need for registration and/or airfare, you can
donate online here or send a check made out to Youth Rally Committee, Inc. to:
Youth Rally, c/o Mary Beth Akers, 949 Chestnut Oak Drive, St. Charles, MO 63303.
All donations are tax deductible.

Michael then segued into a conversational discussion about the psychosocial
adjustment to a chronic condition and how denying your condition impedes
acceptance of self. A lot was covered but my take-away of the main themes were:
 We may unconsciously or consciously overcompensate in other areas, to the
point of our actions being detrimental to our health.
 Common reactions to new medical conditions
 Denial/non-acceptance of chronic condition/disability can lead to anxiety.
 Constantly trying to hide who you are is exhausting and unhealthy.
 Being around people with chronic conditions/disabilities who accept whatever
their deficits are, but then focus on their strengths, are inspirational.
(Michael partnered with Coloplast Care to create an on-demand webinar called
Coping with a New Ostomy, which goes into more depth about adjusting to life with
an ostomy. To view, you need to register but then can watch it at your convenience.
This is the link.)

General Business:
 Reminder of the March 15, 2024, UOAA Ostomy Academy webinar “Bridging
the Gap in Ostomy Nutrition” at 5pm PT, presented by ileostomate Amalia Karlan, R.D. If you missed it, you can listen to this and other recorded
Ostomy Academy webinars and register for future ones at this link.
 SVOSG will have a table at the 8 th Annual “Be Strong, Live Long Health and
Wellness Fair” on Friday March 17, 10am-1pm at Fremont Park, 1303
Fremont Street, Santa Clara. Joining Joanne and Steve E. will be Linda
Mazzie, the Coloplast Rep who spoke to us in March!
 Several members are no longer able to get Coloplast Adhesive Remover
Spray through their medical supplier. Linda Mazzie arranged for 2
pharmacies in San Jose to stock it, but you will have to work with your
insurance for reimbursement:
o American Medical Supply, 3725 Union Ave., San Jose
o Almaden Medical Market, 5353 Almaden Expressway, San Jose
 Susan won the raffle for a year subscription to Phoenix UOAA magazine!

Round Robin:
Several members mentioned that they had experienced intestinal blockages, one
serious enough to be hospitalized, and would like more information on how to
prevent, recognize, gauge seriousness of, etc. On June 11 our speaker will be
Joyce Moss, RN, CWOCN, who will talk about nutrition with an ostomy and I will
ask her to address this specifically!
Nancy shared her non-reversal story and her enthusiasm for life’s new normal,
which she is 100% happy with. Thank you!
Several members have had medical issues arise and we wish them successful
resolution of their conditions.

Future Speakers:
June 11: Joyce Moss, RN, CWON/COCN/CWS is an active contributor to the
Carmichael and Placerville Ostomy ASGs, does webinars for Shield Health Care and
works with Advocacy programs. Joyce will talk about nutrition with an ostomy.
July 9: Lori Dankers, spokesperson for TSA, will share tips on how TSA can
make your next airline trip stress free.
Please let me know what idea interests you for our August meeting – (1) Convatec
Rep, (2) Members Roundtable, (3) (stolen from San Diego Ostomy Support Group)
Members share their answers to these questions:
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?

Reminder: Your SVOSG annual dues can be mailed to our Treasurer Annette
Kaiser, with checks made payable to SVOSG. We are a UOAA ASG (Affiliated
Support Group) and pay them an annual membership fee; by paying your annual
dues of $20 you help offset our organizational expenses (Zoom, UOAA
membership, printing, etc.). Send your check payable to SVOSG, c/o Annette
Kaiser. If you already have – thank you very much! We appreciate it!!!

Meeting adjourned at 8:30 p.m.
Respectfully submitted,
Joanne Harris, Secretary, SVOSG

What Happened at our April 9th Virtual Meeting

President Chloe Moody called the meeting to order at 7:05pm with 14 attendees plus a
guest speaker. It was great to see a few folks that we hadn’t seen in a while!

Our guest speaker was Linda Mazzie, Territory Manager for Ostomy Care for Coloplast
Corp. Linda presented a brief overview of Coloplast, their latest ostomy product line, and
their Coloplast Care program that provides education and support for patients. It was an
interactive presentation where questions were encouraged and answered. Some take-
aways from her presentation:

 Coloplast was the first manufacturer of adhesive ostomy pouches, thanks to a
Danish nurse who came up with the idea for her sister in 1954 and found a
manufacturer to make and distribute them (the founders of Coloplast).
 Anyone, regardless of the type of products they use, can sign up for Coloplast Care
by enrolling online or calling 1-877-858-2656.
 My Ostomy Life app provides ostomy support and help managing ostomy routines.
 Based on customer requests, Coloplast will be adding the color black to the current
transparent and opaque line of pouches.

After the presentation, Linda responded to members’ comments and questions, which
included:
 What to do when dealing with colonoscopy prep output (colostomy and ileostomy) –
use a high output pouch or irrigation bags – call for samples ahead of time
 Odor/lubricant products have a lot of artificial ingredients, can Coloplast make them
more environmentally friendly? Same for non-aerosol vs aerosol sprays.
Response was that Coloplast is always looking for more environmentally friendly
ways to produce products.
 A member shared that the Convex flip doesn’t work with their retracting flat stoma,
but really likes the flexible flange. They are going to try another Coloplast product
(Hollister hard convex is very uncomfortable for her).
 To keep your ostomy scissors sharp, get a Speedy Sharp sharpener.

We invited Linda to join us at the May 17th “Be Strong, Live Long Health and Wellness
Fair” to be held at Fremont Park, 1303 Fremont Street, Santa Clara. If any of you would
like to attend, it is from 10am -1pm.

General Business:
Chloe brought up that our bylaws call for annual officer elections each May. Despite this
being in the bylaws, SVOSG has not done that in practice, in fact going a decade or more
in between elections (primarily due to a lack of interested parties!). Dave made a motion
that we change the bylaws to have elections every 2 years, Eric seconded it and the
motion passed. In the meantime, if anyone has an interest or questions about holding a
position in the future (President, Secretary, and Treasurer) please reach out to Chloe,
Joanne, or Annette. It’s a great opportunity to become more involved and give back to
your support group by donating a little of your time.

We will continue to meet virtually for the foreseeable future due to a lack of available
meeting rooms. That doesn’t prohibit us from meeting in-person once or twice a year for
a social gathering, so if that would interest you let me know and we can discuss it at a
future meeting.

As mentioned last month, there are ostomy education webinars available on the UOAA
website, where it lists future webinars as well as recordings of past webinars. The next
Ostomy Academy webinar is “Bridging the Gap in Ostomy Nutrition” on May 15 at 5pm PT.

We’re doing something fun at our next meeting on May 14 th ! Attendees will automatically be entered into a drawing to win a year subscription to Phoenix Magazine, so zoom in!

Our guest speaker will be Michael Gerald, Ph.D. Michael is a licensed Clinical Mental
Health Counselor and Certified Rehab Counselor currently employed as an Assistant
Professor in Rehabilitation Counseling at Utah State University (USU) in Logan, UT.
Michael is always an engaging speaker on how to deal with the emotional side of being an
ostomate and live the life you want.

Future Speakers:
June 11: Joyce Moss, RN, CWON/COCN/CWS is an active contributor to the
Carmichael and Placerville Ostomy ASGs, does webinars for Shield Health Care and works
with Advocacy programs. Joyce will talk about nutrition with an ostomy.
July 9: Lori Dankers, spokesperson for TSA, will share tips on how TSA can make
your next airline trip stress free.

Reminder: Your SVOSG annual dues can be mailed to our Treasurer Annette Kaiser, with
checks made payable to SVOSG. We are a UOAA ASG (Affiliated Support Group) and pay
them an annual membership fee, which had a significant increase this year. By paying
your annual dues of $20 you help offset our organizational expenses (Zoom, UOAA
membership, printing, etc.). You can send your check payable to SVOSG, c/o Annette
Kaiser. If you already have – thank you very much!

Meeting adjourned at 8:30 p.m.
Respectfully submitted,
Joanne Harris, Secretary, SVOSG

What Happened at our March 12th Virtual Meeting

President Chloe Moody called the meeting to order at 7:05pm with 15 attendees plus a guest speaker.

Our guest speaker was Natalie Martin, R.N., BSN, CWOCN of the Providence Portland Medical Center Ostomy Department.  Thank you, Harriett, for reaching out to Natalie and connecting her to us.  Her presentation was about all things related to parastomal hernias – causes, prevention, and what to do when you have one.   

Some take-aways from her presentation:

  • Natalie believes patients benefit from wearing a support belt post-operatively for 6-12 months to prevent hernias.  They use the Coloplast Brava Ostomy Support binder style belt at her hospital.
  • She mentioned that Stealth Belts are good for aesthetics, exercise and for wearing pouch horizontally, but they do not reduce parastomal hernias.     
  • She spoke about trying just stoma powder where skin is red and moist, vs. crusting as it may be just as effective.
  • Yeast infections can occur under the barrier and tape borders, which they treat with an anti-fungal powder.
  • Parastomal pressure ulcers are very serious and can be caused by tight belts worn over the stoma or pressure from convex wafers.  Sometimes filling the ulcer with stoma powder will take care of it, but wound care may be needed.  Always consult your physician or ostomy nurse in these cases.

After the presentation, Natalie responded to members’ comments and questions:

  • A member shared that they use Vashe wound solution for severe/chronic skin irritations and rashes, as well as Rx for Tacrolimus solution (need to get from a compounding pharmacy – Palo Alto Walgreens in their case).
  • Exercises to prevent hernia: Natalie recommended Ostomy101Inc for core strengthening exercises, and Michigan Medicine Parastomal Exercises and Body Mechanics.  If concerned, ask to be referred to a Physical Therapist.
  • A member shared that they had longer wear time and better wafer adhesion after increasing the diameter (minimally) of the wafer opening – needed to measure stoma.
  • Regarding prolapsed hernias, a question was asked if it was just a matter of time if you have a parastomal hernia – Natalie mentioned that in her experience, prolapse is more common with people who have a “loop” style ostomy (loop colostomy or loop ileostomy).

(Note:  I have requested a copy of Natalie’s presentation and will share it with you when/if I receive it.  Apologies if I didn’t capture 100% of the Q&A)

Raji and Joanne gave a presentation to the nurses in the Ostomy course at SJSU on March 10, 2024, sharing what SVOSG does as well as what tips and tricks would be helpful for them to know when caring for ostomates.  This was a very large class (25 nurses!) and the feedback was very positive.  Several mentioned they would share our presentation with their nursing peers.  We also distributed SVOSG fliers and business cards to the students.  Thank you for volunteering!

On May 17, 2024, SVOSG will again participate in the Santa Clara “Be Strong Live Long” Health and Wellness Fair.  Steve and Debbie will be manning the table, and Joanne will help with set-up.   It should be a fun event!

We welcomed Chris, who is 18 months out from her colostomy surgery.  As she would like to take a trip overseas, we shared some tips on air travel that we’ve learned from previous TSA presentations, and Raji shared how she deals with “ballooning” on long flights – the Osto-EZ-Vent, which can be applied to all bags without a filter!   

Please put our next meeting on your calendar – April 9, 2024, from 7:00 pm – 8:30 pm.  We will have Coloplast Territory Manager Linda Mazzie inform us of what’s new from Coloplast!      

Reminder:  Your SVOSG annual dues can be mailed to Annette Kaiser, Treasurer, with checks made payable to SVOSG.  We are a UOAA ASG (Affiliated Support Group) and pay them an annual membership fee, which has had a significant increase this year.  By paying your annual dues of $20 you help offset our organizational expenses (Zoom, UOAA membership, printing, etc.).

As mentioned last month, there are ostomy education webinars available on the UOAA website, where it lists future webinars as well as recordings of past webinars.  If you missed the March Ostomy Academy on “Parastomal Hernias – Repairs, Prevention and Management Tips” you can watch it there; you can also register for the March 20 webinar “Nutrition with an Ostomy.”

Meeting adjourned at 8:30 p.m.

Respectfully submitted,

Joanne Harris

Secretary, SVOSG

What Happened at our February 13th Virtual Meeting

President Chloe Moody called the meeting to order at 7:05pm with 18 attendees.

Our guest speaker was Dr. Vivian Wong, professor at The Valley Foundation School of Nursing and the Director of the Wound and Ostomy Education Program at SJ State University.  Vivian earned her BSN from the University of Texas at Arlington, her MSN in adult health nursing at the University of Florida, Gainesville, and a PhD in nursing from the University of California, San Francisco.   She was a graduate of the Emory University Wound, Ostomy, and Continence Nursing Education Program and worked as a clinical nurse specialist in both medical-surgical and wound and ostomy nursing.

Vivian shared the history and scope of the WOCN program at San Jose State University, which began in 2014 and is the only accredited program west of Ohio.  Members of SVOSG have participated in the “hands on” portion of the training for 10 years, where they share their personal stories, tips and tricks learned from real life, as well as the ways ostomy nurses can improve ostomate care pre- and post-operatively.   After a nurse has successfully passed this program, they may apply to the Wound, Ostomy, Continence Nursing Certification Board (WOCN-CB) for the certification exam.  If they pass the WOCN-CB exam, they may carry the title as a COCN (Certified Ostomy Care Nurse).  The certification needs to be renewed every five years.

SJSU has on Free Ostomy Clinic open on Fridays from 1:30-7:00pm, excluding school holidays and breaks.  Patients are seen by appointment only, and you can schedule an appointment by calling 408-924-3422.   

I have attached Vivian’s presentation with the minutes email.  Raji, Debbie and Joanne will be SVOSG panel speakers at SJSU Ostomy Course on March 10, 2024.  Thank you for volunteering!   

Following the guest speaker, Chloe gave updates from the UOAA Live! What’s New for You in 2024 webinar that was on 1/30/2024.  This webinar is available on YouTube if you’d like to view it.  Here is a summary of the updates:

  • 2025 UOAA National Conference will be Aug. 14-16, 2025, at the Hyatt Regency Grand Cypress in Orlando, FL.
  • UOAA has 4 Ostomy Academy live webinars planned, the first being on Parastomal Hernias – Repairs, Prevention and Management Tips on March 12 at 5pm Pacific Time.  You can register for this here, and find recordings of past webinars and dates of future webinars under the EVENTS drop down menu on that page.  You can also sign up for UOAA’s monthly e-newsletter when registering.
  • The annual UOAA Youth Rally for Young Ostomates will be held at the University of CO -Boulder this year, from 7/08-13.
  • At that same EVENTS page you can view other ostomy educational webinars, such as two put on by The Gathering Place: The Ins and Outs of Ostomate Life on 2/28 and Nutrition with an Ostomy on 3/20.   

After the announcements, we had a Round Robin.

Several members mentioned via email and at the meeting how useful the Hacks, Tips and Tricks discussed at the January meeting were.

Several members are undergoing diagnostic tests for new symptoms, and we wish them the best outcome.  We also learned that when having an MRI enterography it requires drinking large amounts of liquid every 30 minutes, with contrast added during the procedure, then you’re giving Glucagon to slow down the peristalsis.  There was nothing to prepare her for the copious amount of projectile output following the procedure in the prep literature!

Another had a regrettable experience on a short flight, with her colostomy bag inflating with cabin pressure change.  Because of turbulence the “fasten seatbelt” sign stayed on for the whole flight, resulting in some leakage of effluent when she tried to burp it.  In this case, she was encouraged by the group to let the attendants know you have a medical emergency and use the restroom in the future, even if they must walk you to and from!!  Another hint was to try the Osto-EZ-Vent, which allows you to discreetly release air from any style pouch.

A humorous discussion about “ostomy gurgles” was had, and popular ways to mask or deflect – from “that was my cell phone” to looking at other people, chalking it up to not eating so stomach is gurgling, or matter of factly saying “excuse me, I have a medical device and it makes noise.”  We have a very creative group!

Fashion for women came up and the consensus was that if you’re going to be in the same pants for a long time, stretch is your friend!  As are pintuck tunics and lightweight shawls.

There was a discussion of who we choose to share our surgery history with – typically it was on a “need to know” basis at work, but shared with close friends and family.  Fortunately, we’re all part of the ostomy family!

We will be participating in the annual “Be Strong, Live Long” Health and Wellness Fair at the Santa Clara Senior Center scheduled for Friday, May 17, 2024, from 10 a.m. to 1 p.m.   Thank you, Steve and Debbie, for volunteering!

Reminder:  Your SVOSG annual dues can be mailed to Annette Kaiser, Treasurer, with checks made payable to SVOSG.  We are a UOAA ASG (Affiliated Support Group) and pay them an annual membership fee, which has had a significant increase this year.  By paying your annual dues of 20 you help offset our organizational expenses (Zoom, UOAA membership, printing, etc.).  You can send your check payable to SVOSG.  If you already have – thank you very much!

This was the first meeting using our new zoom link.  Please email if you had trouble using the embedded link (I know of one member who did).  If this happens in the future, you can open zoom.us on your browser, select join meeting and enter the meeting ID and passcode.

Please put our next meeting on your calendar – March 12, 2024, from 7:00 pm – 8:30 pm.  Natalie Martin, CWOCN, will be our featured speaker!     

Meeting adjourned at 8:23 p.m.

Respectfully submitted,

Joanne Harris

Secretary, SVOSG

****

Pets can bring joy into our lives and help get us through the tough times.

I would love to share one or two photos of your pet – or maybe it is a special hobby, friendships or family that brightens your day – and post them at a future meeting!  Just send me your picture/s and a line or two to include.  Some of us are unable to have pets for one reason or another now, but if you had a special pet you’d like to share, please do.  

Joanne

What Happened at our January 9th Virtual Meeting

Our first meeting of 2024 was called to order by President Chloe Moody at 7:05pm with 16 attendees. The topic for discussion was members’ favorite websites, places to get information as well as tips and “hacks”. We want to thank Pixie for suggesting this topic.
We welcomed new ostomate Nancy, just 9 weeks out from her emergency surgery and glad she is doing so well!

We then had a round robin discussion of tonight’s topic. Below is a summary of what we shared:
Fashion: For a smoother look try wearing spanx, skims or similar type of
shapewear supportive undergarments. Ostomy Secrets has a built-in pocket for
the pouch that also gives a lower profile look. Find pants with waistbands that
hit above the pouch. It was agreed that wearing slim fitting clothing does not
injure the stoma!
Rehydration – Drip Drop powder, preferred over Liquid IV; Propel waters
(electrolyte hydration). Drinking lots of water each day was mentioned by
several members.
Miralax is good for regularity.
For nighttime security – (1) disposable panties, (2) compression top from Vanilla
Blush– these makes wearers feel more pouch secure through the night.
A heated and vibrating belt for abdominal pain or cramps.
Support Groups, Websites and Online communities: SVOSG – a source of
information from sharing and speakers; UOAA website (webinars, articles at
ostomy.org); Ostomy 101 has information, classes and support for ostomates.
Several members learn from reading their Phoenix Ostomy magazine or you tube
searches. Meet an Ostomate.org is an online community where you join in
discussion with other ostomates about common concerns, as well as Inspire.com, another online community with over 250 specialty support groups. For
urostomates BCAN (Bladder Cancer Advocacy Network) is an excellent resource.
Also, the major manufacturers have online help desks with Coloplast Care,
Convatec Me+, and Hollister.
Apps for your phone: Ostobuddy keeps track of your inventory and automatically
adjusts when bag changes are made, gives reminders of when to change your bag,
and you can record skin condition, output, hydration reminders, etc.
HerniPro (Canada) and Nu-Hope for hernia belts, and several members have had
success with non-custom OTC belts.
Taking a “naked” shower (no bag or wafer) pre-change, or just a bag-less shower,
giving the wafer area a good rinse was practiced by many!
Using TP (Charmin 3 ply!) or paper towels for bag changes instead of pricey gauze
squares. (I’ve found VIVA paper towels are the closest texture to the ones I used
in the hospital -jh).
If you need to buy supplies not covered by your insurance plan, Medical Monks is
a good resource.
Skin irritation – Butt Paste or Desitin (zinc based) diaper creams, used sparingly
and carefully (using any creams can cause the wafer to not adhere to the skin).
Marathon liquid skin protectant is also very good for protecting compromised
skin (can order online). “Crusting” with Stoma Powder and then Barrier Spray or
Wipes can also be done. If you’ve bathed with a moisturizing soap, washing the
stoma area with original Head and Shoulders shampoo (contains zinc) will leave
the parastomal skin pouch ready.
Colo Majic flushable pouch liners can be used with 2 piece ostomy pouches, and
reduces the number of pouches used by at least half (note these are not safe for
septic tanks).
Storing Supplies – Plastic bins that can be stored under the bed, organized by type
(i.e. a bin for bags, bin for wafers, bin for sprays/powder); or a wheeled multi-drawer cart organizer. A small organizer for the bathroom closet that holds supplies for approximately 3-4 weeks of changes.

Dave suggested that we collaborate on a list of things new ostomates need when
they go home from the hospital, so we could send that to new members. I think
that would be of real value, since usually we don’t know what we don’t know in
that situation, and it can be overwhelming. So put on your thinking caps and
we’ll review this topic at a future meeting.

Annette reminded us that 2024 annual dues can be mailed to her, with checks
made payable to SVOSG. Dues are $20 and help offset our organizational
expenses (Zoom, UOAA membership, etc.).
You can send your check to SVOSG. If you already have – thank you!

Our guest speaker for the February 13 meeting is Vivian Wong, PhD, RN, CNS,
CWON, CFCN. She is a professor in the School of Nursing at San Jose State
University and Director of the WOCN program. We participate in the WOCN
program twice a year by sharing our personal stories and experiences with the
nurses, as well as tips and tricks we’ve learned. Perhaps after hearing about the
program from Vivian you would like to volunteer! We are looking for a
colostomate to volunteer to participate in the WOCN training at San Jose State
University on Sunday, March 10, 2024, from 10am to 12:30pm. Parking passes
and lunch are provided.

We will be participating in the annual “Be Strong, Live Long” Health and Wellness
Fair at the Santa Clara Senior Center scheduled for Friday, May 17, 2024 from 10
a.m. to 1 p.m. Thank you, Steve and Debbie, for volunteering!
Meeting adjourned at 8:38 p.m.

Respectfully submitted,
Joanne Harris, Secretary, SVOSG