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Schedule of  Upcoming 2020 Meetings

      • (Virtual) August 11, 2020 07:00 PM Pacific Time
        • Zoom Meeting. For more information please contact support@svosg.org or call (408) 365-4452
        • 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 2021.

Have extra supplies to donate?

Kindred Box
6841 Virginia Parkway

Suite 103-183
McKinney, TX 75071

——
2019-Logo-transparent2
Supplies can be shipped to: FOW-USA, 4018 Bishop Lane, Louisville, KY 40218-4539.
FOW-USA is a 501(c)(3) non-profit organization and all donations are considered tax deductible contributions.

Need Supplies?

Hallers Medical Supplies

  • Haller’s Medical Supply (Ostomy) in Fremont
  • 510-797-2221 extension 330 – Kathy Riccardi will respond
  • Open 10-4:00

What Happened at our July 14 Virtual Meeting

The July meeting was called to order at 7:05 pm in our new venue called Zoom by Crystal, 18 people were in attendance for the meeting.

Crystal introduced the officers and then she initiated round robin of introductions. Tonight, we were joined by members who have found it difficult to fight the traffic in the past to join with us at O’Connor Hospital, but tonight, they were with us on ZOOM! It was great to see Michael. We also welcomed Natalie to our group. Natalie is looking into what Ostomy surgery is all about. We tried our best to answer some of her questions.

The round robin was a bit on the interesting side as each person shared a bit of their ostomy story with the group. From Natalie who is in the planning stages to some of our more experienced ostomates. Each story is different, but there is a similarity to each. Some had very difficult times before the surgery, others did not. But in each case, after the surgery, life got better. JoAnne was out hiking, Crystal was dancing, Michael found life to be easier from his wheelchair than it was before the surgery. Each person shared from the heart. Julie was very appreciative of the help she had received for her mother who is a new ostomate.

A couple of interesting notes that you might find helpful:

Hernia belts can be found on Amazon at a savings. Also, Ostomy Disposal bags can be purchased from Edgepark.com, 1-800-321-0591.

We were joined tonight with Chloe. Chloe just turned 21 and has had an ostomy all of her life. Because she needs additional fluids, she has a permanent pick line that she self-administers. Chloe told us her story. In high school, played baseball, she is now a junior at UC Berkeley. As a lifelong ostomate, she now is an advocate for UOAA. She writes for Club 11 Health and the Phoenix magazine. I have added some of what she has written below.

BLOGS Ostomy Support I Needed

By: Chloe Moody

What would you do if your child was born with a rare, life threatening disease and given a colostomy bag just days after birth?

Probably the first thing my parents did: look for support.

My parents joined the UOAA in 2001, two years after my birth when it was looking like my ostomy would be permanent, and they started to consider the lifelong impact. Back then it was just the UOA, and my local chapter was huge.

There were over 150 members, and we were greeted by a conference room packed full of mostly elderly ostomates welcoming us with open arms and more support than we could ever ask for. Miraculously, there was one girl my age, a year older than me who also had a colostomy from a rare birth defect. She and I played barbies under the table every month while our worried parents were reassured that our futures were full of possibilities and promises.

Ten years later, this girl and I would become co-directors on the board of that same chapter while our fathers assumed roles of President and Vice President respectively, doing our part for the community that gave us hope.

It started when I was thirteen, actually. We hadn’t been to many UOAA meetings in years, having our weekends filled instead with home improvement and birthday parties. Going into middle school, I became very depressed, and went down a bad downward spiral.

I began hating my body, my ostomy and all it represented. I wanted to get it off at whatever cost, but my hopes were shattered when it was determined that I didn’t have enough intestines for any other options, much less enough to reach to my rectum. 

In my devastation, my parents suggested it would be a good idea to go back to UOAA meetings. Once again, the support and community was overwhelming, and I no longer felt alone. It was a quick process to be a member of the board, the youngest in history, and an even quicker process to make plans to attend the upcoming conference in 2015.

That conference was what changed my life.

We had actually attended two conferences prior, in 2001 and 2003, but obviously I remember very little except having fun in the hotel pool! This time, I had just had a resection surgery that came with many complications. I was extremely weak and frail at the conference, barely even cleared to make the four our flight to St. Louis.

Nevertheless, the response from the young ostomates group was the same: accepting me as one of their own, like family, and showing me unconditional love and support. I was immediately invited to a nice lunch with them where they insisted I would not pay for my own meal, followed by inviting me to the zoo with them. I was too frail to walk, so my new friends took on the task of wheeling me in a wheelchair around the entire zoo, something I will be forever grateful for. I will never forget the kindness they showed me, particularly Alyssa, whom I am proud to call my fellow patient coach and the strongest person I know.

It was after this conference I knew I wanted to be a part of something bigger, to be an advocate and spread awareness and make my story heard.

I started writing for the Phoenix magazine, appearing on the cover in my softball uniform when I was fifteen. I attended regular UOAA meetings, made more friends and connections, and continued every day to tell my story and spread positivity. I proudly showed off my bag on social media, documenting every hospital admission to show that my life was unlike any teenager, yet I still showed up the next day for softball practice. Soon, I saw a call on Maggie Baldwin’s instagram for an opportunity to become a voice for patients, to coach new ones, and the rest is history.

Today, I am still a proud board member of the UOAA. My chapter has grown, and now have three locations across the Bay Area, two of which I regularly attend. Every month I make the 90 minute drive across the bay because I look up to these people so much. If I don’t show up one day, what if there is a new patient who is lost and needs support? For them, I go every time without fail, even bringing my boyfriend. My dad is no longer President, instead a strong lady in her mid forties whom I have the upmost respect for. She has taught me so much about leadership and advocating for yourself and I am so lucky to work alongside her supporting my community. I hope to be president of my own chapter one day.

I will never stop advocating for my community and giving patients a voice. This community has made the biggest impact on my life and my family’s lives. I want to be that role model for my thirteen-year-old self, to be that person people see and think “if she can do it, so can I.”

Our next meeting is scheduled for Tuesday, August 11th, starting at 7:00 pm. The details of that will be sent out a week before the meeting and the day before.

Finally, if anyone has a particular need for something to be brought up at our meeting, please let us know ahead of time and we will do our best to be prepared!

The meeting adjourned at 8:22 pm.

Respectfully Submitted,

Dave Bunger

Secretary

What Happened at our June 9 Virtual Meeting

The June meeting was called to order at 7:08 pm in our new venue called Zoom, Crystal, 17 people were in attendance for the meeting.

Crystal talked about the fact that we may be using the “Zoom” system for a long time to come. At this point, we do not know when O’Connor will open the doors to us. We also realize that the De Paul Room is much smaller than the Rosalie Rendu Room. So, if anyone has an idea or suggestion for a place we can meet, that would be great! Until then, we will continue to “Zoom”!  Starting in July, we will have a different Zoom account and it will allow people to call in and participate. More on this as we get closer to the July 14th meeting. Ironically, that is Bastille Day.  I want to Thank Virginia L for helping Virginia Y to be part of the meeting. They arranged the use of a cell phone. Next month, we will not have to do that!

Crystal led us on a brief round robin, with each member giving a brief description of what is going on with their Ostomy. Julie shared with us her mother’s surgery, which was May 27. She came home on June 6. Julie is working with her care givers to help her mother along. Julie was very complementary to Crystal for all of the help provided!  Jennifer joined us, but she did not offer to share her dinner!

We also welcomed Chloe to our meeting. Chloe has had an Ostomy all of her life. She talked about some of the issues she has faced and told us about 11Health.org.  Take a look at the following:   https://www.club11health.com

Rayhaneh joined us from Oregon. She told us about her recent experience with a Blockage. Very painful. So, to try to help, we are offering the following:

Stomal Blockage

An Ostomate with an ileostomy or Colostomy should learn some important tips and emergency signs to manage their stoma in case of a blockage.

Foods high in fiber may cause a problem. All foods should be chewed slowly and thoroughly. In the case of a new stoma foods should be slowly added back into the diet and watch for reactions as different foods affect people in different ways. You also need to stay well hydrated with 8 – 12 cups of water daily.

Eating large amounts of foods at one time may not be digested properly and cause a blockage, this could become an emergency if not managed correctly.

Signs of blockage are constant spurting of liquid or a watery stool, feeling full or bloated, cramping, swollen stoma, nausea and vomiting, the problem with blockages are that the intestine could rupture, and you could become severely dehydrated.

It is important to remember the following points if a blockage is suspected:

    • Don’t eat solid food.
    • Consume liquids such as Water, Coke or tea.
    • Avoid use of laxatives.
    • Cut the opening of your pouch a little larger than normal as the stoma may swell.
    • Massage the abdomen and the area around the stoma as this might increase the pressure behind the blockage and help it to “pop out.” Most food blockages occur just below the stoma.
    • Lie on back pull knees to chest and roll side to side.
    • Take a hot bath for 15 – 20 minutes.

If those steps don’t work and the conditions persist for more than 2 hours or if you start vomiting.

SEEK MEDICAL ATTENTION EITHER FROM YOUR STOMA NURSE or YOUR HOSPITAL A&E DEPT

To prevent blockage in the first place you should chew food slowly and thoroughly, eat small amounts of new foods and limit high fiber foods.

Beware of foods that are known to cause blockage problems such as corn, celery, popcorn, nuts, coleslaw, coconut macaroons, grapefruit, Chinese vegetables such as bamboo shoots and water chestnuts, raisins, dried fruit, potato skins, apple skins, and orange rinds.

Intestinal Blockages

Laura Cox | Ostomy Lifestyle Specialist | Shield HealthCare

“When you have an intestinal blockage, you’ll know.” That was the response my surgeon gave me right after stoma surgery, when I asked him what a blockage felt like and if I had to be concerned. It wasn’t a very specific answer, but he was very right.

Allow me to elaborate a bit on my surgeon’s answer. Or watch my video on how to help clear an intestinal blockage:

      • http://www.shieldhealthcare.com/community/ostomylife/2017/03/02/help-clear-intestinal-blockage/

Laura Cox | Ostomy Lifestyle Specialist | Shield HealthCare

What is an intestinal blockage?

A blockage, also known as a bowel obstruction, is when the bowel becomes obstructed and the passing of some or all intestinal output is prevented.

What causes an intestinal blockage?

A blockage is usually caused by food, inflammation, intestinal twisting or adhesions (scar tissue).

How can I prevent an intestinal blockage?

Some tips to prevent a food-induced blockage are to always stay hydrated, chew well, drink a lot of fluids after meals, and avoid hard-to-digest foods (like corn and mushrooms).

What are the symptoms of an intestinal blockage?

    • Very small amounts or a complete lack of output
    • Abdominal pain
    • Nausea
    • Vomiting
    • Abdominal swelling
    • Swollen stoma

What can I do if I have an intestinal blockage?

Some lesser blockages can be resolved with home remedies, but always call your doctor first for instructions. If you cannot reach your doctor, go to the emergency room.

Sometimes your doctor will advise you to try to pass the blockage at home first.  Some ways you can treat a blockage at home are:

    • Walking aids in digestion.
    • Drink a lot of fluids, including grape juice and hot tea. Carbonated beverages can also help.
    • Take a hot bath or use a heating pad on your abdomen. This will relax your muscles and sometimes allows the blockage to pass.
    • Gently massage around your stoma to encourage the blockage to work its way out.
    • Check to see if your stoma is swollen. If it is, replace your pouching system and cut a bigger hole in your wafer.
    • Try different positions, like lying on your side, or putting your bottom up in the air and your head on your forearms.
    • If you get blockages a lot, your doctor may send you home with a sterile rubber catheter to self-catheterize your stoma. Only do so if you are directed by a doctor.
    • If none of these treatments resolve your blockage, call your doctor back and wait for further instructions.

What can I expect when I get to the hospital?

The types of treatments and procedures you may (or may not) experience are:

    • NPO (Nil per os) – this means you are not allowed to eat or drink anything. This is because you cannot pass any food or beverage consumed. NPO is used to try to prevent too much vomiting.
    • Fluids – you will be given fluids via IV to hydrate you.
    • NG Tube – Nasogastric tubes are used to relieve pressure in the abdomen and prevent vomiting.
    • Catheter insertion into the stoma- sometimes a catheter is inserted into the stoma to open up the passageway and hopefully resolve the blockage. This sounds painful, but usually just feels like a bit of pressure.  The physicians may put water through the stoma to try to flush out the blockage.
    • Abdominal X-ray or CT scan- this allows the doctors to further understand what is causing the blockage.
    • Monitoring urine – they will monitor your urine to make sure you’re not too dehydrated.
    • In very severe cases, surgery may be required, but many blockages can be passed without surgical intervention.

What is the recovery like?

I was pleasantly surprised after being discharged from the hospital after my first serious blockage had passed. The experience was painful, but the recovery time was much quicker than I had experienced with other hospital visits.  Once the blockage passes, your body generally bounces back very quickly.  Make sure to follow your doctor’s instructions about diet, exercise and follow up appointments.

Our next meeting is scheduled for Tuesday, July 14th, starting at 7:00 pm. As mentioned, if needed, people can call in to the Zoom meeting. The details of that will be sent out a week before the meeting and the day before.

Finally, if anyone has a particular need for something to be brought up at our meeting, please let us know ahead of time and we will do our best to be prepared!

The meeting adjourned at 8:29 pm.

Respectfully Submitted,

Dave Bunger

Secretary


What Happened at our May 12 Virtual Meeting

The May meeting was called to order at 7:04 pm in our new temporary venue called Zoom, Crystal, 21 people were in attendance for the meeting.  Each person in attendance now can be referred to as an official Zoomie! Crystal is our Captain Zoomie!

Crystal and Jennifer started the round robin introductions of everyone that joined the meeting. Reyhaneh joined us from Oregon where she is in her last year of Pharmacology. We also had Elizabeth from Stanford, Brittany, our Medical Advisor, who told us she is now a Nurse Practitioner, congratulations! We also had a very Special person join us; Dr. Paul. Paul got his Ileostomy in 1961 and was the Web Master for our group for many years. It was great to see him and through his efforts and his wife Ursula, they added a lot of positive energy to the group for many years! We extend a great deal of gratitude to Dr. Paul! Paul moved to Fresno some time ago and he maintained our Web site from Fresno. Paul told me it was time to turn over the reins to a new Web Master.

I want everyone to welcome Derek as our new Web Master. We are the largest support group in the country and it is due in part to the efforts of these two men! We Thank you!

Each member of the group introduced themselves and told what brought them to our group. Colostomy, Ileostomy and Urostomy got us here, and how each of us deals with the process. Julie was on with her mother who is going to have her procedure later this month. As her mother does not speak English, Julie was asking questions then explaining to her mother what to expect. Margo joined us with a fabulous Hawaiian background that got everyone’s attention. Eddie was there, but would not share his stash of Costco popsicles!

Jennifer asked everyone to look for a new place for us to meet. We do not know when we can gather together, and O’Connor may not let us back in, we simply do not know. If you know of a location that we could use, please let Crystal or Jennifer know.

We are looking at buying Liability Insurance for our group as the places we have talked to require it. If you know of someone that deals with this kind of insurance, please let us know.

Virginia informed us that the “Be Strong, Live Long” Health & Wellness Fair scheduled for Friday, May 29 has been postponed.

As soon as we know anything different, it will be passed along.

Several people asked about the Golden Gate chapter, Support Group. They meet the fourth Tuesday of the month at Mills Health Center in San Mateo. 100 S San Mateo Drive, San Mateo, CA. The president is Jessie and can be reached at 510-789-7585, email address is jesdama@goldengatechapterostomy.com. The Golden Gate Support group typically has 6-8 people at a given meeting.

Reyhaneh shared some interesting information. She was having an issue with a blockage. She tried something different. She went to Costco and bought an Inversion Table. From what I gathered, she leans back and ends up partially upside down. She loves it. Food for thought!

Elizabeth shared a very helpful web site for translation.

This is provided as we have a member whose mother is going in for surgery and does not speak English. Using the information for communication boards to help her communicate.

Our next meeting will be June 9 at 7:00 pm. For more information please contact support@svosg.org or call (408) 365-4452.

The meeting adjourned at 8:16 pm.

Respectfully Submitted,

Dave Bunger

Secretary


What Happened at our February 11 Meeting

The February meeting was called to order at 7:00 pm in the de Paul Room by Crystal, 19 people were in attendance for the meeting. 

Establishing something a bit new for our group, Ms. Kathy and Dr. Paul were nominated to become the first two Honorary Members of the Silicon Valley Ostomy Support Group. Kathy has been a long-time member, secretary and owner of the Santa Clara Ostomy and Medical Supply. Dr. Paul, also a long-time member and current Web Master for our group. We gratefully appreciate their efforts in assisting to make our group what it is today.

We also nominated Ms. Brittany, RN, WOCN as the group’s new medical advisor. 

We then welcomed Ms. Tonya, BSN, RN, CWOCN and Ms. Bonnie, RN, Clinical Manager, both from El Camino Hospital Wound Care Center. Tonya brought along a number of pouches, pastes, powders, that she talked about then passed around the room. Tonya and Bonnie both talked about what services the Wound Care Center at El Camino Hospital can provide for ostomates; Services include Pre-Operative care including Stoma Site Marking Education, Post-operative teaching, nutrition counseling, pouching, product fit and ordering, Ostomy complication management and trouble shooting, hernia, support belt assistance and how to irrigate. The Wound Care Center is located at 2660 Grant Road, Suite F, Mountain View. To schedule an appointment, call the Wound Care Center at 650-940-7003.

Tonya demonstrated the proper use of Stoma Powder and Skin Prep. Powder First, gently shake off any excess, then use a spray on Skin Prep. Good to use to protect the skin. She also handed out some Ostomy Nutrition Guides.  

She also talked about various suppliers and explained some of the rules of dealing with Medicare. 

The Silicon Valley Ostomy Support Group wants to thank Tonya and Bonnie for their participation in our meeting. We look forward to future visits. 

One of our members, Virginia L. brought along a new product from Stoma Genie. Stomagienics. Inc. This product was the result of a man who was having issues and so he designed the Stoma Genie. I spoke with Teresa at Stomagienics and she will be sending us a video and products in the future. StomaGenics can be reached at 1-844-696-7866. (See additional info below)

On Friday, May 29, from 10 am to 2pm, the City of Santa Clara will be hosting the fourth annual “Be Strong, Live Long” Health & Wellness Fair. The date was moved to avoid inclement weather and the time has been extended by an hour. Virginia L. will be our point person for this event. She would greatly appreciate your help, even if it is for an hour. The fair will be held in Fremont Park, adjacent to the Senior Center in Santa Clara.

We began collecting dues for 2020. We voted to assess ourselves $20.00/year to pay the few bills that we have. Annette, our Treasurer collects and records this. Cash, Check or Stock certificates will gladly be accepted. The check should be made out to the Silicon Valley Ostomy Support Group. Thank you to those who are helping to keep us going.

I want to Thank Diana for bring cookies. Sure was nice!

Meeting adjourned at 8:43 pm,o                             

Dave Bunger – SVOSG Secretary  


Supplemental to the minutes: 

Hello Dave!

I enjoyed talking to you today and am excited to share information about our products, the StomaGenie® and SecurPress®.

The StomaGenie Capture Cartridge® is a biodegradable cartridge lined with super absorbency designed to capture effluent during a pouch change.  With the cartridge covering the stoma, it can capture any uncontrolled effluent which eliminates the anxiety of recontamination.  This allows ample time to properly clean and prepare the peristomal skin for the next baseplate.  

Additional benefits are:

If a stoma is not round, we can create a custom adapter to fit the stoma while using our capture cartridge

it reduces the risk of skin irritation/and or infection because peristomal skin is properly cared for

reduces the cost of supplies by getting the change right the first time

discreet – can be used anywhere, no clean up required

odor is contained with cartridge in place

there is no mess to clean up (soiled gauze, paper towels, washcloths, etc.), simply cap and throw the StomaGenie® away!  Please visit us at www.stomagienics.com

Below is a link to a video detailing how the cartridge works during a pouch change:

 https://vimeo.com/374762304

Below is a link to a video detailing how to use our product, the SecurPress®, which is designed to help secure the baseplate to the peristomal skin between the flange and stoma:

https://vimeo.com/357818619

The StomaGenie® is Medicare reimbursable under HCPCS code A5081 up to 31 cartridges a month and is covered by most insurance companies.

Our insurance distributor is: Medical Care Products, Jacksonville, FL; patti@ostomymcp.com; 1-800-741-0110

Our retail distributor is: Medical Monks; https://medicalmonks.com/product/stomagenie-disposable-capture-cartridges/

We currently have a special running entitled “5-Change Challenge”, purchase 5 cartridges for $19.95, fill out a survey prior to use, complete an exit survey and receive a box of 10 cartridges free!  If interested, please email theresa.johnson@stomagienics.com.

Please don’t hesitate to contact me should you have additional questions!

Theresa Johnson

Co-Founder

Mobile 225.939.1460

Please visit us at www.stomagienics.com


What happened at our January 14th Meeting

The January meeting was called to order at 7:10 pm in the de Paul Room by Jennifer. 21 people were in attendance for the meeting.

We handed out “Stoma Tips” a publication from England. These were sent to us from MA Healthcare in London England. We want to express our sincere thanks to  Mr. Benjamin Wakefield for sending them to us.

Thank you for requesting a copy of Stoma Tips, the free biannual magazine that provides frank and honest advice on ostomy products to help readers find the stoma routine that works best for them.

You will shortly receive your copy of the current issue and then every issue we subsequently publish. You can read a free digital version of our latest issue here.

We have a dedicated customer service team who can help with any enquiries you have around delivery problems, contact information changes or for whatever reason should you no longer need to receive the magazine. If you can contact them on +44 (0)1722 716997 or by emailing subscriptions@markallengroup.com

Kind regards,

Benjamin Wakefield,
Editor of Stoma Tips Magazine

We welcomed three new members to our group. Tonya, a CWOCN from El Camino Hospital. Tonya offered to speak to our group at our next meeting in February. We gave Tonya several copies of Stoma Tips to take with her to El Camino Hospital. Julie, who came to see what our group is about. Her mother is scheduled to have a colostomy soon and does not speak English. Julie asked a number of questions and we invited her to bring her mother to upcoming meetings. We also welcomed Paul, who recently had a colostomy.  While not a new member, James and his wife Dana drive from Livermore to attend out meeting. They both talked about what they get out of coming. We are glad that they are with us!

Jennifer began our introductions by telling us about her own journey. While no one wants to have an ostomy, not getting one can result in death. We are happy that she chose to have the procedure as well as everyone else at our meeting. As we went around the room, many stories were shared, from the most recent ostomate to Robert, who had his procedure in 1991. Each story is unique, each story is special and each story was shared from the heart.

Eddie came to our meetings before he had his Colostomy, to ask questions and he told us that he spent a lot of time watching U Tube videos to prepare himself. He swears by the “Stealth Belt”.

We are trying to get Collin from Stealth Belt to speak at our March meeting, as soon as we hear anything, we will let you know.

We began collecting dues for 2020. We voted to assess ourselves $20.00/year to pay the few bills that we have. Annette, our Treasurer collects and records this. Cash, Check or Stock certificates will gladly be accepted. If you want, you can mail your check to Annette.

The check should be made out to the Silicon Valley Ostomy Support Group.

If someone has the time to create some delicious treat for our next meeting, it would be greatly appreciated. Either that or if you could stop by a bakery and pick up some goodies, we will pay for them. Makes the meeting more enjoyable. Please let me know if you can help out.

If you have a suggestion for a speaker, please let me know. I will gladly make the request. In the past, we have had Surgeons, Nephropathic Doctors, Physical Therapists, Acupuncturists, Ostomy Supplier Representatives. If you have a suggestion….

At our next meeting, a motion will be brought forward for the following: For our first two Honorary Members:

Ms. Kathy – Former Owner of Santa Clara Ostomy and longtime Member and Secretary of our group.

Dr. Paul – Longtime member of our group and current Webmaster for the group.

Brittany, WOCN, will be nominated to become our new Medical Director.

Our Next Meeting will be February 11 in the de Paul Room starting at 7:00 PM

If anyone has surplus Ostomy Supplies, Friends of Ostomates Worldwide, fowusa.org would be happy to help you. Supplies can be shipped to:

FOW-USA, 4018 Bishop Lane, Louisville, KY 40218-4539. FOW-USA is a 501(c)(3) non-profit organization and all donations are considered tax deductible contributions.

Meeting adjourned at 8:43 pm
Dave Bunger – SVOSG Secretary