Home Page

Our Next Meeting – Tuesday, September 13, at 7 pm.

Our next meeting is September 13, 2016 @ 7:00 PM in the Rosalie Rendu Room, in the cafeteria. Give yourself a bit of extra time as O’Connor is now locking the doors near the cafeteria at 6:00 pm. The front doors of O’Connor are still open past 6:00 pm.

Schedule of Future Meetings  – 2016

September 13, October 11, November 8, December 13

Persons who have recently experienced surgery or are about to undergo surgery are encouraged to attend, as well as those who support ostomates.

Map & directions to meeting.

What happened at Our August 9 Meeting

The August meeting was called by to order in the Rosalie Rendu Room at 7:00 PM by Crystal. 19 people were in attendance for the meeting.

Give yourself a bit of extra time as O’Connor is now locking the doors near the cafeteria at 6:00 pm. The front doors of O’Connor are still open past 6:00 pm.

Next Meeting is September 13, 2016. We are planning to be in the meeting room adjacent to the  cafeteria, Sr. Rosalie Rendu room, but as we experienced in the May meeting, we had to move down the hall. So, if you do not see familiar faces in the cafeteria, walk down the hall to the De Paul room!

We had a new person who joined with us. Carolyn T. We welcomed her.  Annette K. is headed for Stanford for surgery. Please keep good thoughts for her.

Crystal began the meeting by having each person introduce themselves and provide a brief synopsis of their ostomy.

Robyn H., WOCN was at her last SVOSG meeting as she has decided to retire and go back to Australia in a couple of weeks. Robyn has been a strong supporter of the SVOSG for the last 8 years. We thank her enormously for her incredible willingness to help anyone with ostomy issues. We wish Robyn and her husband a safe journey and a happy retirement. Robyn introduced Sandra from B. Braun as they had worked together at Coloplast.

Sandra McElwee, CWCMS and the Regional Chronic Care Specialist for B. Braun. B.Braun is a relatively new company to the United States that has Ostomy supplies. Sandra showed a video about B.Braun ostomy items that was very informative. After the video, she handed out samples and answered questions about what is different and why. Then she handed out forms for anyone that wanted to tryB.Braun products. If you are interested, look at www.bbraunusa.com. At the conclusion of her presentation, Sandra and Robyn departed for a going away dinner.

One of our members, Sigrid W. Just had successful reversal surgery in May of this year. She told us it took some time for her body to realize what happened, but now all is well. She is doing great and would be happy to talk to anyone about the procedure. Contact Dave for her email address.

Linda E. appreciates the generosity of our members who donated towards the “goodies” fund. While she has not enough money in the pot for steak and lobster, I think we will be having “good stuff” for quite a while!

Dave passed around the list to make certain we have current email addresses. I am trying to make sure that meeting information gets out to everyone. Please ensure that we have your current email address.

Remember, if I can’t read it, I can’t type it……

If you have a suggestion for a speaker for our September meeting, please let Jen know so we can schedule it. Remember, it takes all of us to make our meetings a positive experience and worth going to. October 11, is a unique meeting for us. Several years ago, we selected the October meeting to be the annual ostomy appliance change event. We talk about ostomy issues; this is an event to actually see someone change their device. It is a learning experience for all. We have had the same people the last couple of years and need new volunteers for the event. Crystal stated that when she first heard of this, it was going to be more than show and tell. She said last night, it has been educational for her and has learned from it. That is the purpose of it. Please give it some thought and volunteer for this.

The Silicon Valley Ostomy Support Group still needs a treasurer; we need to have 3 people on theaccount. You do not have to be a CPA for this, we just need help!

Starting in January 2017, our dues will go up to $20.00/year. This is needed to keep up with expenses. Expenses are:

  1. Dues to UOAA
  2. Phoenix magazine subscription
  3. Business cards, etc…
  4. Now that O’Connor Hospital has a new owner, Varity and they are requiring that we have liability insurance for the use of the meeting room. Crystal found some insurance for $500.00/year. We are to work it out with new owners.

Our NEW Phone number is: 408-768- 9162. The meeting was adjourned at 8:20 pm.

What happened at Our July 12 Meeting 

The June meeting was called by to order in the Rosalie Rendu Room at 7:06 PM by Jennifer. 15 people were in attendance for the meeting.

Give yourself a bit of extra time as O’Connor is now locking the doors near the cafeteria at 6:00 pm. The front doors of O’Connor are still open past 6:00 pm.

Next Meeting is August 9, 2016. We are planning to be in the meeting room adjacent to the cafeteria, Rosalie Rendu room, but as we experienced in the May meeting, we had to move down the hall. So, if you do not see familiar faces in the cafeteria, walk down the hall to the De Paul room!

Group Introductions were made as usual. We had four new people. We welcomed Roger & Mariette and Ed & Sheryll to our group.

Jennifer then introduced Dr. Jennifer Jewell-Larsen, ND, Naturopathic Doctor and Medical Director of Naturopathic Family Health and Dr. Casey Berkebile, ND, and Acupuncturist. They brought with them a document that addressed Nutrition and Digestion Information. Both Drs. spoke about what happens in the body, especially after an ostomy procedure and how it affects the absorption of nutrients in the body.

Dr. Jennifer explained what a Naturopathic Doctor does that is different that a Medical Doctor. The first appointment with either Doctor is scheduled for 90 minutes. They want to know about you as a person, not just another body walking in the door. She and Dr. Casey explained a lot of what they do is based on blood tests that go far beyond the usual routine items normally looked at. Our president, Jennifer sees Dr. Jennifer and has learned about things she can and cannot eat as a result of these tests.

Dr. Jennifer explained to us that while there are many over the counter items a person can buy, a recent study of a number of products found that what is advertised in too many cases is NOT what you get. She recommended buying products that are confirmed by a third party. She mentioned New-Chapter that is at Whole foods. Their web site is http://www.newchapter.com.

If you are interested in additional information, you can call Jennifer Jewell-Larsen, ND, or Casey Berkebile, ND, LAc at 408-356-1364 or email at Info@nf-health.com.

The presentation was excellent and all that were there got a lot out of it.

The Silicon Valley Ostomy Support Group still needs a treasurer; we need to have 3 people on the account. You do not have to be a CPA for this, we just need help!

Starting in January 2017, our dues will go up to $20.00/year. This is needed to keep up with expenses;

Expenses are:

  1. Dues to UOAA
  2. Phoenix magazine subscription
  3. Business cards, etc…
  4. Now that O’Connor Hospital has a new owner, Varity and they are requiring that we have liability insurance for the use of the meeting room. Crystal found some insurance for $500.00/year. We are to work it out with new owners.

There will be a guest speaker for our August 9th meeting. Sandra is the representative from B.Braun. Robyn H. recommended B.Braun as a company with very good products.  As Robyn knows Sandra, she will also be at the August meeting.

If you have an idea for a speaker for the September meeting, please let Jennifer or Crystal know so we can schedule it. This is our group and to make it successful, it takes all of us to help out.

Linda Ells has been bringing in cookies and other goodies at each of our meeting. Since we all enjoy “Her” cooking or shopping, if you can help out with a few dollars, it would be greatly appreciated. (This was my comment, not Linda’s!)

The October meeting will be something you first want to volunteer for,  and not miss. Our Group started several years ago, a demonstration of how to change an Ostomy Appliance. Several people have walked the group through how they change their appliance. Now is the time for new (3) people to offer to step up. The whole idea behind this was to be a learning experience. We need your help to make it work!

Our NEW Phone number is: 408-768-9162.

The meeting was adjourned at 8:45 pm.

What Happened at Our June 14 Meeting

The June meeting was called by to order in the Rosalie Rendu Room at 7:00 PM by Jennifer. 14 people were in attendance for the meeting.

Give yourself a bit of extra time as O’Connor is now locking the doors near the cafeteria at 6:00 pm. The front doors of O’Connor are still open past 6:00 pm.

Next Meeting is July 12, 2016. We are planning to be in the meeting room adjacent to the cafeteria, Rosalie Rendu room, but as we experienced in the May meeting, we had to move down the hall. So, if you do not see familiar faces in the cafeteria, walk down the hall to the De Paul room!

Group Introductions were made as usual. We had a couple of new people and so time was spent discussing various ostomy issues.

Jennifer discussed the recent Board meeting. All board meetings are open to all members of SVOSG! The taxes have been filed, there was nothing to pay, just had to report. The dues to UOOA were paid, ($2.50 per member).

Crystal checks the email and phone messages. We get a number of questions from people who want to talk with someone with the same type of issues/problems/concerns. Would you like to help out? If anyone is available to help with these calls/emails and is willing to talk with these people, you would help someone. Also requested was people who speak different languages beyond English, also anyone that can read and write other than English. Please let Jennifer or Crystal know how you can help.

Right now we do not have a PO Box, so all mail is currently being sent to Jennifer’s home. The Silicon Valley Ostomy Support Group still needs a treasurer; we need to have 3 people on the account. You do not have to be a CPA for this, we just need help!

Jennifer will contact our Web Master to update our Web Site.

We are trying to determine if UOAA offers any leadership training or Outreach Training. The Outreach training would be for hospital, Doctor office staff with the intent of introducing the Silicon Valley Ostomy Support Group to new Ostomy Patients. Does anyone have any ideas on how we can get set up for visits?

Possibly a nice SVOSG Brochure, would be a start. Who can help develop this? Please contact Jennifer or Crystal with your ideas!

We have new Board Members!

  1. Annette is a Board Member at large. John made the motion, Sharon and others seconded the motion and it passed.
  2. John is now the membership chairman. Annette made the motion, Rich seconded it and it passed.

Thank you both for stepping forward!

The next UOAA Conference is scheduled for August 22-26 in Irvine, California. It will be at the Hotel Irvine. There was some discussion of the Conference that was held in Reno in 2011. Several of our members had attended.

Our NEW Phone number is: 408-768- 9162.

Questions that came up during the meeting:

1. Problems with Edgepark Billing.
2. Calls asking for personal information such as SSN’s, birth dates, etc. Jennifer said “Do not be afraid to say NO!” Do not give out personal data!
3. Shield Health Care Robo Calls. Problem seems to be fixed now.

4. What to do about blockage/obstruction and how to know if you have one.  Some suggestions:

i. Lot’s of fluids – IV if serious –
ii. If you end up going to the Emergency Room, ask for a surgeon right away!

The meeting was adjourned at 8:20 pm.

What Happened at Our May 10 Meeting

The May meeting was called by to order in the Rosalie Rendu Room at 7:00 PM by Jennifer. 19 people were in attendance for the meeting.

Give yourself a bit of extra time as O’Connor is now locking the doors near the cafeteria at 6:00 pm. The front doors of O’Connor are still open past 6:00 pm.

Next Meeting is June 14, 2016. We are planning to be in the meeting room adjacent to the cafeteria, Rosalie Rendu room, but as we experienced in the May meeting, we had to move down the hall. So, if you do not see familiar faces in the cafeteria, walk down the hall to the De Paul room!

Group Introductions were made as usual. We had a couple of new people and so time was spent discussing various ostomy issues.

Several people commented about the listed phone number not working. We are in the process of getting a new number. As soon as we have it, it will be put on our web site!

On May 14, a Benefit Comedy Show was put on at Alum Rock Park to help research for Crohn’s and Colitis research. The information was emailed to our members. If you attended this show, please come to the June meeting and let us know how it went.

Speaking of email, Dave is trying to put together an accurate email roster with the intent being to send out information pertaining to our group. If you have not been getting email from Dave, please come to the meeting and give him your current email address. The people that have gotten the information said it is a good thing! But it only works with your address in the data base.

We were planning to have a Naturopath, Jennifer Jewell-Larsen, ND, BS/Phd. She contacted Jennifer and had to reschedule for another time. As soon as we have a valid date, the information will be sent out.

One of our members, Sastry who now lives in India, came to the meeting. He is helping ostomates in India and has a desperate need to Ostomy supplies. Timing is everything since Santa Clara Ostomy can no longer send supplies overseas. His son lives here in San Jose and can facilitate getting the supplies to India. Please contact Dave for the address.

Jennifer asked if anyone had suggestions for Guest Speakers, Company Reps, Sally T., WOCN, Robyn H., WOCN, were suggestions. If you know of someone that you think the group would find interesting, please let Jennifer or Crystal know and how to contact them.

The August 9th Meeting we will have a Rep from B. Braun to speak. Robyn Home told us about B. Braun and said they have some great Products. As Robyn knows Sandra, Robyn will ALSO be at our August meeting! That is worth the price of admission itself!

Dear Dave,

It was great talking to you today. I look forward to meeting your Ostomy support group on August 9th.

Thank you very much! Sandra McElwee, CWCMS Wound Care Specialist – B.Braun Medical Inc.

Jennifer mentioned she would like to have a Board Meeting of the current officers. No date was set for this to happen.

Jennifer brought up a request she received from a Youth Rally. This group deals with kids from 11 to 17 having chronic issues with bowel and bladder problems. They are looking for a donation and Jennifer asked the group for input. If you have an opinion about this, please contact Jennifer and let her know.

The meeting was adjourned at 8:20 pm.

What Happened at Our April 12 Meeting

The April meeting was called by to order in the Rosalie Rendu Room at 7:04 PM by Jennifer. 18 people were in attendance for the meeting.

Next Meeting is May 10, 2016. We are going to have a Naturopath, Jennifer Jewell-Larsen, ND, BS/Phd. Because we anticipate many questions, we are going to plan our meeting to go from 7:00 PM to 9:00 PM in the Rosalie Rendu Room.

Give yourself a bit of extra time as O’Connor is now locking the doors near the cafeteria at 6:00 pm. The front doors of O’Connor are still open past 6:00 pm.

Santa Clara Ostomy can no longer send Ostomy Supplies overseas. So one of our members, Sastry, who is now living in India and is helping Ostomates there with supplies, can use them. We will discuss the details of how this will happen at our May meeting. If you have any ostomy supplies that you can donate, please bring them to the May meeting. Sastry will be in attendance.

We had a guest speaker at our meeting. Andrew Fitzcharles who has been doing Acupuncture since the late 80’s discussed how Acupuncture can treat a numbers of issues. He mentioned nausea as one. He has a clinic in Los Gatos and also works at Kaiser in Walnut Creek. He told us he has had great success in helping people after having Ostomy surgery. Acupuncture in Chinese means Needle and Heat. He can be reached at 408-356-6601 for more information.

On Sunday, April 3rd, several members of our group went to San Jose State’s WOCN Nursing program. This is the only WOCN program west of the Mississippi. According to Virginia, they really look forward to this meeting as it gives the nurses a chance to talk to people that have Ostomies. I was told the lunch that followed is very good. We try to have at least one of each type of Ostomate at the meeting. Virginia & Jennifer are the coordinators for this program. If you are interested in attending the next planned event, talk to Jennifer or Virginia.

Jennifer asked if anyone had suggestions for Guest Speakers, Company Reps, Sally T., WOCN, Robyn H., WOCN, were suggestions. If you know of someone that you think the group would find interesting, please let Jennifer or Crystal know and how to contact them.

Jennifer mentioned she would like to have a Board Meeting of the current officers. No date was set for this to happen.

Jennifer brought up a request she received from a Youth Rally. This group deals with kids from 11 to 17 having chronic issues with bowel and bladder problems. They are looking for a donation and Jennifer asked the group for input. If you have an opinion about this, please contact Jennifer and let her know.

One of our members brought up a Team Challenge that is dedicated to Crohn’s and Colitis. His daughter is trying to raise money for research in this area. Come to the May meeting for more information.

A lot of questions came up during the introductions and were answered. The meeting was adjourned at 8:30 pm.

What Happened at our March 2016 Meeting

The March 8th. meeting was called by to order in the De Paul Room at 7:00 PM by Jennifer. 17 people were in attendance for the meeting.

The Ostomy Nursing Program at San Jose State has volunteers for a meeting on Sunday, April 3, 2016 meeting. The meeting begins at 10:30 am and runs until 12:30 pm. This program provides instant feedback to the nurses participating in the only Ostomy program west of the Mississippi River. After the class, lunch is served. This has become a vital part of this program. The following people have volunteered:

Eva L.- I, Linda S.- I, Richard S. I, Virginia L.- U, Annette K.- C

John E. I, – (Backup)

If this interests you, please contact Jennifer or Crystal and let them know.

Jennifer is planning to have a Naturopath, Jennifer Jewell-Larsen, ND, B.S./Phd at our meeting in May. Jennifer took questions to give to the Dr. Jewell-Larsen. If you have additional questions, please contact Jennifer.

Jennifer asked if anyone had suggestions for Guest Speakers, Acupuncturist, Company Reps, Sally T., WOCN, Robyn H., WOCN, were suggestions. If you know of someone that you think the group would find interesting, please let Jennifer or Crystal know how to contact them.

Annette K. brought up Inspire.com. A lot of discussion items are brought up that you might find interesting. Take a look at https://www.inspire.com/groups/ostomy. You will find all kinds of information there!

A product that was mentioned was ILE-SORB. This is a product that can be put into an ostomy bag to thicken the output. Take a look at www.Cymedostomy.com or call 1-800-582-0707 for more information.

THE ORIGINAL ILE-SORB® HCPCS A4422
Soluble absorbent granule packets for ileostomy effluent.

The Original Ile-sorb® granules absorb the ileostomy fluid and evenly distribute the weight. Keeps effluent away from barrier—can increase wear time. Plastic film packet enclosing the granules dissolves inside pouch. Makes emptying more manageable. Increases security.

Also shared was Magnesium Oil. A member suffering from Neuropathy found she was deficient in Magnesium. She tried this product and found that it helps. Take a look at www.Ancient Minerals.com.

Ancient Minerals ultra-pure magnesium oil contains a high concentration of 100% naturally occurring magnesium chloride and other trace minerals, drawn from the ancient Zechstein Sea. Apply topically for rapid absorption of magnesium into our largest and most efficient organ, our skin. 8 fl oz pump spray bottle.

Jennifer mentioned she would like to have a Board Meeting of the current officers. No date was set for this to happen.

Jennifer brought up a request she received from a Youth Rally. This group deals with kids from 11 to 17 having chronic issues with bowel and bladder problems. They are looking for a donation and Jennifer asked the group for input. If you have an opinion about this, please contact Jennifer and let her know.

Introductions of the group started with Jennifer. Tonight we had two new Ostomates join our group. Dan and Sec, who brought his wife Dovis.

A lot of questions came up during the introductions and were answered. Most of the meeting was devoted to the questions and answers.

Items that were brought up during this period included the following:

Stealth Belts- Expensive but effective for support during physical activity.
Ostomy Secrets – Again a belt, more reasonably priced.

Thanks go to Virginia for bringing home made goodies, they were great! Rich brought excess supplies to the meeting for anyone that might be able to use them.

The meeting was adjourned at 8:30 pm.

What Happened at our February 2016 Meeting

The February meeting was called by to order in the Rosalie Rendu Room at 7:00 PM by Crystal. 23 people were in attendance for the meeting.

Next Meeting is March 8, 2016 @ 7:00 PM in the De Paul Room! Give yourself a bit of extra time as O’Connor is now locking the doors near the cafeteria at 6:00 pm. The front doors of O’Connor are still open past 6:00 pm.

The Ostomy Nursing Program at San Jose State needs volunteers for an April 3, 2016 meeting. The meeting begins at 10:30 am and runs until 12:30 pm. This program provides instant feedback to the nurses participating in the only Ostomy program west of the Mississippi River. After the class, lunch is served. This has become a vital part of this program. The following people have volunteered:

Eva L. I, Linda S. I, Richard S. I,
John E. I, Annette K. C, – (Backups)

If this interests you, please contact Jennifer or Crystal and let them know.

Jennifer is going to try to have a Naturopath at our meeting in March or April depending on availability..

Introductions of the group started with Jennifer and Crystal. It took a bit longer than normal as tonight we had six new people at the meeting. Sigrid, Jennifer L., Diane, Devin, Randy and Steven were welcomed to the group.

A lot of questions came up during the introductions and were answered. Most of the meeting was devoted to questions and answers.

Items that were brought up during this period included the following:

Discussion about various Vendors
The various “Pastes” that are on the market
Auto Tensioning Belts – Look at Amazon
Sween Cream – Coloplast – Coloplast | 620283 | Sween Moisturizing Cream, Nonocclusive 2g
Stealth Belts – Ostomy Support Solutions | Stealth Belt | Ostomy Belt
Colomagic bags – Colo-Majic Flushable Liners « CMOSTOMY SUPPLIES
Underwear – With Support Pouches for the bag

Jennifer brought excess supplies to the meeting for anyone that might be able to use them. The extra items were taken to Santa Clara Ostomy by Sharon for Kathy to send to parts of the world that desperately need ostomy supplies.

The meeting was adjourned at 8:30 pm.

New Resource – Ostomy A to Z

What Happened at our January 2016 Meeting

The January meeting was called by to order in the Rosalie Rendu at 7:00 PM by Crystal. 15 people were in attendance for the meeting.

Next Meeting is February 9, 2016 @ 7:00 P.M. in the Rosalie Rendu Room! Give yourself a bit of extra time as O’Connor is now locking the doors near the cafeteria at 6:00 pm.

Crystal began the meeting reading an email from our Co-President, Jennifer. She has been having some health issues and just recently found out what is going on. Please keep good thoughts for her.

Jennifer also offered to arrange for a guest speaker next month who is a Naturopath. Crystal asked if the group was interested in this subject and the response was overwhelming. Make sure you attend next month!

If you know someone that might talk to our group about issues that interest ostomates, (that’s us!) please talk to Jennifer or Crystal. Remember, this is our group and it takes all of us to make it better!

A cause for celebration. Long time Silicon Valley Support Group member John and Linda just celebrated their 50th anniversary. Congratulations to them both…..

Sharon bought up the need for our annual dues as 2016 is beginning. Annual dues are $10.00 and Sharon will be glad to accept that and if you can help out with a bit more that would be greatly appreciated. Please do what you can in this regard. While the expenses of our group are not earth shattering, there are expenses and to pay them, we need your help….

Mike came to his first meeting and had a number of questions. A lot of people provided him an input and he left with a lot of information….

We are trying to get Sally, a WOCN Nurse to attend our meetings on an on-going basis. More to follow.

Virginia brought a lot of material from the annual UOAA meeting in St. Louis and shared that with the group.

The next UOAA meeting will be in Manitoba Canada August 18-20, 2016. You might want to put that on your Bucket List!

John brought up issues with various products as a result of improper temperature control of Ostomy products during shipping. The major manufacturers do not seem to be concerned as they use outside contractors to ship their products. Some of the concerns are that after buying a given product, it might not adhere to your skin because it was subjected to extreme cold or hot…..Be aware….

Information Corner for Ostomates:

Have you ever had a bag burst on you at night when you were asleep? Take a look at www.11health.com. This is an Ostomy Bag Fill Sensor that can alert you to a bag that is getting full…..It can notify your smart phone to wake you up….The product is called Ostom-i Alert Sensor. An ostomy patient patient

developed the Ostom-i Sensor. Stanford University is a sponsor of this and Dr. Larry F. Chu, MD is the principal investigator for this.

Are you interested in Irrigation for your Ostomy? Derrick suggested looking at the UOAA Discussion Board for Irrigation Option for Colostomates. Also, there are video’s on YouTube that demonstrate irrigation techniques if you are interested.

Here is the Irrigation forum I mentioned at the SVOSG: https://www.uoaa.org/forum/viewforum.php?f=12

Lots of great tips in there, and if you have questions, post and many can give suggestions.

Crystal adjourned the meeting at 8:15pm. A number of people stayed and talked after the meeting was over……