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Schedule of  Upcoming Meetings

      • (Virtual) June 11th, 2024 07:00 PM Pacific Time
        • Zoom Meeting. For more information please contact support@svosg.org or call (408) 676-6733
        • 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.

What Happened at our May 14th Virtual Meeting

Coming soon…

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