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Our Next Meeting – Tuesday, June 14th, at 7 pm.

Our next meeting is May 10, 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

June 14, July 12, August 9, 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.  The next meeting is May 20, 2016.   Map & directions to meeting.

What Happened at Our May 14th Meeti9ng

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……