Schedule of Upcoming Meetings
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- (Virtual) Feb 11th, 2024 7:00 PM Pacific Time
- Monthly Zoom Meeting. For more information please contact us.
- (Virtual) Feb 11th, 2024 7:00 PM Pacific Time
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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
What Happened at our December 7th Holiday Party
It was a great turn out for our first in person meeting in many recent years. 24 people in attendance!
What Happened at our November 12th Virtual Meeting
President Chloe Moody called the meeting to order at 7:05pm with 17 people attending. The meeting started with general meeting notices and then moved to a very lively and helpful round robin where people shared concerns and possible solutions.
We welcomed back Namita and her mother-in-law from Bombay, who had attended a meeting when she visited a few years ago.
General Business:
Steve, Raji and Joanne represented SVOSG at SJSU’s ostomy nurse training program on Sunday, October 13. We share our stories, what new ostomates need to know and give the nurses insight into how best to support us. We also share all the websites and “accessories” that we’ve discovered to make life easier, such as traveling with medical supplies, going through airport security, etc. I encourage all of you to participate in this training, which is held twice a year, as it is very rewarding to both presenters and participants!
Joanne gave an update on our upcoming Holiday Party – 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
- Assorted drinks will be provided, and we ask that you bring some holiday savory or sweet treats to share!
- Please bring an unwrapped gift for our raffle, which has always been lots of fun – this is the only fundraiser SVOSG holds to help pay for things like our Zoom subscription, UOAA membership, printing, etc.
- The way it works is tickets (3 for $5, 7 for $10) 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! CASH IS PREFERRED for ticket purchase.
It will be great to meet you in person vs. over Zoom! An email invite will be sent out to regular participants this week.
This party takes the place of the December meeting. If there is enough interest, we will consider having quarterly hybrid (Live and Zoom) meetings using Cancer CAREpoint’s facility in 2025.
Round Robin:
Unfortunately, we’ve had several members deal with health issues and hospitalizations. Thank you to all who shared so openly.
Harriett shared her positive parastomal hernia repair experience. So now it’s just Stewie the Stoma, and no more Huey, Dewey and Louie (names for her hernias!). She may have inspired several of us to address this common issue!
Namita was able to get some guidance from members regarding colostomy irrigation and pouch adhesion issues for her mother-in-law. Dave looked up support groups in Bombay and found several for her to research, although it appears that ostomy care is quite limited there.
Derek is getting better, no longer needs pain meds but is suffering from bedsores that developed during a 40-day hospitalization recovering from a perforated rectum because of a colonoscopy. Sending you healing thoughts Derek!
Chloe has had 3 consecutive stays in hospital over the last month starting with a straightforward gyn surgery being complicated by adhesions, and more recently having to be hospitalized for a blockage. All while trying to keep up with grad studies, being our President and keeping a positive outlook.
Dave is getting stabilized at an extended care facility following hospitalization for elevated blood sugars, exacerbated by pre-chemo medications. In addition, he must deal with a torn rotator cuff on his dominant arm. Let’s keep our fearless champion in our good thoughts!
Nancy shared her success using Nasacort nasal spray on her parastomal rash – all clear now! This was recommended by her ostomy nurse at Stanford. (Raji has used Flonase successfully for minor skin irritations.)
WE’RE LOOKING FORWARD TO SEEING YOU ON DECEMBER 7!
ANY QUESTIONS, PLEASE CONTACT JOANNE – joanne@svosg.org
Meeting adjourned at 8:30 p.m.
Respectfully submitted,
Joanne Harris, Secretary, SVOSG
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