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Our Next Meeting is Tuesday, December 12, 2017

The meeting will take place at 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. Persons who have recently experienced surgery or are about to undergo surgery are encouraged to attend, as well as those who support ostomates.

Schedule of Future Meetings

2017 

December 12.

2018

January 9,  February 13, March 13, April 10, May 8, June 12, July 10, August 14, September 11, October 9, November 13 & December 11.

Map & directions to meeting.

What happened at Our November 14, Meeting

The November meeting was called by to order at 7:00pm in the Rosalie Rendu Room by Crystal. 17 people were in attendance for the meeting.

We went around the room introducing ourselves and giving a brief history of what we were faced with.

Gretchen had some excellent questions about Ostomy supplies. She received some great answers and was told about the Edgepark Catalog and Santa Clara Ostomy.

One item that came up was the cutting of ostomy supplies with scissors. How do you keep your scissors sharp? Richard has a tool and we are hoping he can bring it to the December meeting to demonstrate. Dave mentioned a Speedy Sharp. He will bring that to the December meeting. Where to donate Ostomy Supplies.

Derek attended the UOAA Ostomy 6th National Conference in Irvine, California. Derek gave us an overview of the conference. He enjoyed it and recommended all of us should go. The next one is in two years. Derek is our resident irrigation expert. He shared some of his experiences and the procedure he follows.

Annette brought a list of places that accept Ostomy Supply donations. This list was handed out. The list will be posted on our Web Site. This will allow someone who has supplies to donate them. Ostomy 2-1-1 will send you a donation letter stating the IRS will allow $50/lb for tax purposes. You must keep a record! Where you can donate unused ostomy supplies.

The December 12th Silicon Valley Ostomy Support Group meeting will be a bit different. We would like to make it a bit festive. In order to do that, it is requested that you bring something to the meeting that we can raffle off. The proceeds of the raffle will contribute to our bank account. Last year, there were bottles of wine, boxes of chocolate, blankets, and other items. Our group does not have fund raisers so anything you can donated will help! If you have something, please bring it and help raffle it off! Crystal did an excellent job last year! If you want a tax deduction, donate to the group.

As the Silicon Valley Ostomy Support Group is comprised of people either with an ostomy or may be having one in the future, it is our group. In order to make it successful, we need your help. Do you know someone that might talk to our group? We have had, doctors, nurses, reps from ostomy supply companies, acupuncturists, naturopathic doctors, and life style coaches. If you have a suggestion for a speaker, please let Jennifer or Crystal know. Remember it is our group and it takes all of us to make it work!

The phone number for our group is on a temporary hold status. As soon as it is operational, we will again post the number.

The meeting was adjourned at 8:25 pm.

Respectfully submitted,

Dave B

What happened at Our October 10th Meeting

The October meeting was called by to order at 7:00pm in the Rosalie Rendu Room by Dave. 16 people were in attendance for the meeting. Jennifer joined us and kept the meeting on track!

We went around the room introducing ourselves and giving a brief history of what we were faced with. Tonight, we welcomed two new people to our group. Ron G and his partner and Gail and her husband.

We were also joined by Vivian W. from San Jose State. Vivian manages the Wound Care and Ostomy Program at San Jose State. She also met our volunteers that will answer questions from the nurses that are enrolled in the program. That will occur October 22 at San Jose State. She informed us that Washington State University now has a Wound Care program.

The October meeting has become a VERY Special meeting as we, for the last several years, have had volunteers demonstrate how they change their device. Tonight, Jennifer changed her Ileostomy device, Annette changed her Colostomy device and Virginia walked us through what she goes through to changed her Urostomy. My compliments to the ladies of our group who volunteered, an excellent demonstration! Vivian also provided a great deal of assistance with technical questions, thank you Vivian! Annette, and we thank her, filled her car with excess ostomy supplies, these supplies will be sent to those in need! She discovered a group called Ostomy 2-1-1, that provides ostomy supplies for low income and people without insurance. Thank you, Annette!

October has become a busy month for our group. On October 22, we have been invited to go to San Jose State Wound Care and Ostomy Nursing program. This, until recently, was the only WOCN program west of the Mississippi. This program allows nurses in training to talk to people with Ostomies. Virginia has developed a Power Point program that allows nurses to see what Ostomates experience. This has been  well received by the staff at San Jose State. Typically, three of our members volunteer to go. Then they serve a nice lunch. Jennifer and Virginia coordinate this event.

As the Silicon Valley Ostomy Support Group is comprised of people either with an ostomy or may be having one in the future, it is our group. In order to make it successful, we need your help. Do you know someone that might talk to our group? We have had, doctors, nurses, reps from ostomy supply companies, acupuncturists, naturopathic doctors, and life style coaches. If you have a suggestion for a speaker, please let Jennifer or Crystal know. Remember it is our group and it takes all of us to make it work!

The meeting was adjourned at 8:50 pm.

What happened at our Sept. 12 Meeting

The September meeting was called by to order at 7:01 in the Rosalie Rendu Room by Dave. 9 people were in attendance for the meeting.

This evening we welcomed Kathy R, owner of Santa Clara Ostomy and longtime member of the Silicon Valley Ostomy Support Group.

The October 10 meeting is in need of your help. Several years ago, we began a new agenda at the October meeting. While at eleven of our meetings, we talk about ostomies, problems and solutions, it all seemed to be theory. So, we have had several people volunteer to demonstrate how they change their device. The response has been VERY positive as we all learn. But if the same people demonstrate how they do it, year after year, we might not see a better way to change a device. So what we are asking for are VOLUNTEERS for the October 10 meeting. Remember, this is our group and we have become like family. Let’s continue to help one another. Please contact Jennifer, Crystal or Dave to volunteer. Thank you!

We went around the room introducing ourselves and giving a brief history of what we were faced with. I find this extremely interesting to watch the newer people as the “veterans” tell it like it is. A bond develops that has become an extended family of people who care about people!

Kathy, from Santa Clara Ostomy then talked about the services her store provides and how they can bill Medi-care. They do not bill individual insurance companies but take care of Medi-care for you.

She then spoke about Hernia Support Belts and what is available. Nu-Hope has developed a new belt that Kathy can fit for you that is called a “comfort belt”. This belt does not roll up She has sold a lot of them and feels they are a benefit. This belt, along with the other Nu-Hope Belts can be set for, different widths and different size stoma’s. Any questions, call Kathy 408-296-7890 or stop by at 2455 Forest Avenue, (behind Valley Fair). Mastectomy fittings are also done at Santa Clara Ostomy.

Dave talked about receiving an email from a member of our group that was having some issues. Sent his questions to several WOCN Nurse’s, Rawnie and Robyn, down in Australia and to Jennifer. All three sent suggestions and helped him out. I want to Thank each and every person for their help.

October has become a busy month for our group. On October 22, we have been invited to go to San Jose State Wound Care and Ostomy Nursing program. This is the only WOCN program west of the Mississippi. This program allows nurses in training to talk to people with Ostomies. Virginia has developed a Power Point program that allows nurses to see what Ostomates experience. This has been well received by the staff at San Jose State. Typically, three of our members volunteer to go. Then they serve a nice lunch. I sent an email to Vivian, who runs the program about excess ostomy supplies that the nurses could take back with them or be used at San Jose State. Vivian said YES! Please bring any and all.

So, saying that, bring any excess supplies to the October 10 the meeting and somehow, we will get them to San Jose State and to Ostomy 2-1-1.  Jennifer and Virginia coordinate this event.

Annette has also found another group and send any supplies to them. I would be willing to take what’s left and send it to Ostomy 2-1-1, the organization that supplies low and no insurance people here in the US.

I also want to Thank Sharon for taking the minutes. I appreciate your help. The meeting was adjourned at 8:05 pm.

What happened at our August 8 Meeting

The August meeting was called by to order at 7:01 in the Rosalie Rendu Room by Crystal. 18 people were in attendance for the meeting.

Tonight, we welcomed Mary Lee, WOCN Nurse to our group. Mary has been an RN for 20 years and works at O’Connor hospital.

We also welcomed Linda to our meeting. Her husband John was tragically taken from us on July 5. We passed the hat and collected money that Linda said John would want that money donated to Paralyzed Veterans of America. Annette, our treasurer will take care of that!

Stanford Hospital is looking for volunteers for a study of a device that will attach to an Ostomy bag and  alarm if the bag gets full. It transmits the data to an iPhone. Jamie Gamble at Stanford needs our help with this. If you are interested, please contact Jamie at jgamble@stanford.edu. You will need to go to Stanford for the initial visit.

There was discussion regarding the upcoming UOAA 6th National Conference, August 22nd to the 26th, 2017 in Irvine, California. At the conference you will find, Doctors, Nurses, Vendors and a lot of other people that can answer almost any question you might have! Virginia L. has a reservation that unfortunately she will not be able to use. If you are interested, she can transfer that reservation to you at the reduced UOAA rate. Contact Virginia at virginialarsen@icloud.com.

If you are interested in learning more about this event, click herereservationscanbe made now.

Cong Thanh Nguyen, LAc, came and spoke about Acupuncture and it’s benefits for a variety of issues.Frozen shoulder, anxiety, can’t sleep and other issues. His office is located at 5595 Winfield Blvd. #106, San Jose, California, phone # 408-792-7229 or cong@svnaturalhealth.com. He took a number of questions from the group and several of our members will be seeking his help.

Linda brought ostomy supplies that John had for anyone who could use them. The left-over items, Annette took them to give to a local organization to help those in need.

A quick introduction of each member was done. We are trying to keep it short so we have time to discuss issues related to ostomies.

John was the keeper of a lot of the groups documents and paper work. If someone could help out in this area, it would be greatly appreciated. Sharon currently has the Ostomy “Box” and will ask for some help next month. Please give this some thought and talk to Sharon at the September meeting!

It was mentioned that Kathy at Santa Clara Ostomy does the paper work for submittal to Medicare. This surprised a number of people! Kathy will be at our September meeting!

The meeting was adjourned at 8:20 pm.

What happened at our July 11 Meeting

The July meeting was called by to order at 7:00 in the Rosalie Rendu Room by Jennifer. 22 people were in attendance for the meeting.

We had two new people join us tonight;
Ann- Urostomy – 3/2017
Robert – Ileostomy – 1999

We welcome Ann and Robert to our group.

We began the meeting reminiscing about one of our members. John E. was riding his Harley on July 5, 2017. He was stopped at a light and a Mercedes SUV did not stop. The Police and Fire Department responded and found John under the Mercedes. They tried to resituate John and were not successful. John was declared deceased at the hospital. John was a vital member of our group. He and his wife Linda brought understanding, wisdom and humor to our group. John will be missed.

A moment of silence was observed. We passed an envelope for a memorial for John. We collected $215.00.

A quick introduction of each member was done. We are trying to keep it short so we have time to discuss issues related to ostomies.

Discussion occurred about how various vendors have screwed up orders and it takes several months to straighten out. It was mentioned that Kathy at Santa Clara Ostomy does the paper work for submittal to Medicare. This surprised a number of people!

Several people brought up a new Coloplast Brava Protective Seal. This seal will apply to weepy skin and hold.

Virginia brought a number of items for show and tell. Some of the items were unique yet effective. Made for an interesting explanation!

A discussion of Wound Care facilities took place. One of our new members said she found out about the Silicon Valley Ostomy Support Group from the wound care group at Stanford. The wound care facility at O’Connor was mentioned and “Carol” was given an Outstanding compliment for her help with ostomy patients.

There was discussion regarding the upcoming UOAA 6th National Conference, August 22nd to the 26th, 2017 in Irvine, California. Copies of the conference program were handed out. At the conference you will find, Doctors, Nurses, Vendors and a lot of other people that can answer almost any question you might have! John and Linda already made their reservations for the cruise. You will have to ask them about the dinner cruise. If you are interested in learning more about this event, click here. Reservations can be made at that website.

The meeting was adjourned at 8:35 pm.

What happened at our June 13 Meeting

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

We had two new people join us tonight;

  1. Steve – Colostomy May 2017
  2. Elizabeth – RN – A WOCN nurse who asked for our help.

Introductions were beginning by Jennifer with each person describing a brief history or what they were researching to do in the future. We are going to try to keep the introductions brief to allow for more time for detailed discussions.

Elizabeth asked us to complete a survey for her as she is renewing her certification. She then stayed for the remainder of the meeting.

Virginia, brought with her a PowerPoint Presentation that she has developed with input from our group called “Ostomates’ Hints”. This presentation is designed to help Ostomy patients in their learning curve with this new normal in their lives or Us helping others through you. She presents this to the San Jose State WOCN Nursing program several times each year.

A brief synopsis of the presentation included the following:

  1. Ostomy Stories, 2.  Ileostomate/Colostomate Tips, 3.  Urostomate Tips, 4.  All Ostomates – Hints & Tips, 5.  The Future, 3D Pouch Printout, 6. Resources, 7 Products, 8. It’s a Gift!

Virginia continues to add items to this presentation. Our plan is to put this on the Silicon Valley Ostomy Support Group Site in the near future.

A couple of things worth mentioning. The Silicon Valley Ostomy Support Group does have some expenses that are paid by our dues program. The dues are $20.00/year. This money goes to pay for the insurance we need to have in order to use the facilities at O’Connor and a few other items such as a telephone. If you can help out with this, it would be greatly appreciated. If you cannot make it to the meeting, email me and I will send you Annette’s address. Thank you…Several members helped out tonight, Thank you!

While there was a brief discussion of what a “Barbie Butt” is, no one presented their own definition. So, saying that, we will try again in July!  

There was discussion regarding the upcoming UOAA 6th National Conference, August 22nd to the 26th, 2017 in Irvine, California. Copies of the conference program were handed out. At the conference you will find, Doctors, Nurses, Vendors and a lot of other people that can answer almost any question you might have! John and Linda already made their reservations for the cruise. You will have to ask them about the dinner cruise. If you are interested in learning more about this event, click here. Reservations can be made at that website.

Please remember you can find the dates of our 2017 meeting schedule on our Web Site. Please look at http://svosg.org for that information. July 11 is our next meeting! Thanks to Linda for great cookies!

The meeting was adjourned at 8:30 pm.   

What happened at our May 9th Meeting

The May meeting was called by to order at 7:07 in the Medical Conference Room by Crystal. O’Connor Hospital were having BBQ’s for the staff and had the Rosalie Rendu room full of supplies for their event. The catering staff when we asked for help, were outstanding. Larry offered us the use of the Medical Conference room and free drinks. Thank you, Larry. 21 people were in attendance for the meeting.

  1. We had three new people join us tonight;1. Joe and his wife Darcy –
  2. Kita and her two sisters, one of which is a Wound Care/Ostomy Nurse
  3. Joyce

Introductions were beginning by Crystal with each person describing a brief history or what they were researching to do in the future. After receiving emails from our new members, they all appreciated that part of the meeting and felt very welcomed.

After the introductions were completed, an open forum began. People with questions brought up and in almost every case a satisfactory answer followed. The wealth of knowledge in our group continues to amaze me.

Jennifer was at home tonight in the recovery mode. We look forward to seeing her soon.

A couple of things worth mentioning. The Silicon Valley Ostomy Support Group does have some expenses that are paid by our dues program. The dues are $20.00/year. This money goes to pay for the insurance we need to have in order to use the facilities at O’Connor and a few other items such as a telephone. If you can help out with this, it would be greatly appreciated. If you cannot make it to the meeting, email me and I will send you Annette’s address. Thank you…

Our Meeting in June will be special. Virginia will present the Power Point program she has developed and shows to the Nurses at San Jose State Wound Care/Ostomy Program. There is a wealth of knowledge there and Virginia is extremely knowledgeable. Get there early on June 13…….

While there was a brief discussion of what a “Barbie Butt” is, no one presented their own definition. So, saying that, we will try again in June!

There was discussion regarding the upcoming UOAA 6 th National Conference, August 22 to 26, 2017 in Irvine, California. Copies of the conference program were handed out. At the conference you will find, Doctor’s, Nurses, Vendors and a lot of other people that can answer almost any question you might have! John and Linda already made their reservations for the cruise. You will have to ask them. If you are interested in learning more about this event, click here. Reservations can be made at that website.

Please remember you can find the dates of our 2017 meeting schedule on our Web Site. Please look at http://svosg.org for that information.

The meeting was adjourned at 8:30 pm.

What happened at our April 11th Meeting

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

Jennifer recently had additional surgery in San Francisco, spent a few days there, then came home. She was home for a few days then made a quick trip to the ER at O’Connor. From there, it was back to San Francisco for a couple more days. She is now at home and on the recovery trail! John spent most of yesterday at the Kaiser Hospital ER. It was not a fun day for John. Please put Jennifer and John in your prayers.

We started the meeting with introductions. We had two new members tonight. Cameron and Paul. Paul is a Urostomate and loves to backpack. If you are interested, please talk to him. Cameron is a new colostomy patient and we were able to give him some suggestions.

Virginia, Annette and Cindy talked about their experience of going to the San Jose State WOCN program. This is an event at the only WOCN nursing program west of the Mississippi. Having ostomates there allows the nurses to ask pertinent questions that they might otherwise not be able to ask.

There was discussion regarding the upcoming UOAA 6th National Conference, August 22nd to the 26th, 2017 in Irvine, California. Copies of the conference program were handed out. Virginia also talked about the value of going to this conference. At the conference you will find, Doctor’s, Nurses, Vendors and a lot of other people that can answer almost any question you might have! If you are interested in learning more about this event, click here. Reservations can be made at that website.

I have included in this month’s minutes an article written “By Korin Miller for Self.” We have permission from Amy Miller, Deputy Editor, Self to include it in our minutes. I think you will find it to be interesting. Click here to read the article.

Several members paid their annual dues. While the group does not have a lot of expenses, the liability insurance, ($500.00/year), the phone and a few other items needs our help. Dues were set at $20.00/year of to cover these items. If you can, please help and pay your dues, thank you…If you are unable to make the meetings, you can email me for an address so they can be mailed in. Thank you…..

Please remember you can find the dates of our 2017 meeting schedule on our Web Site. Please look at http://svosg.org for that information. Next meeting is May 9th in the Rosalie Rendu Room. We start at 7:00 pm. At our June meeting,
Virginia will present the Power point presentation she has put together for the program at San Jose State. I know you will find it interesting.

Finally, last night, the term “Barbi-Butt” came up. While some have a good idea, I am looking for the bestdescription for a “Barbi-Butt to include in our list of terms. Derek was the first member that I can recall using the term, so maybe he will have a great description! Please email me your description, be detailed, and we will vote on the winner. The winner will receive either a bottle of wine and a box of chocolate!

The meeting was adjourned at 8:27 pm.

What happened at our March 14th Meeting

The March meeting was called by to order at 7:00 in the Rosalie Rendu Room by Dave. 16 people were in attendance for the meeting.

Jennifer joined up this evening and told us what she has been going through. It looks like March 28, she will have surgery. Her Doctor thinks they have a great plan this time and she should be walking in tall cotton soon afterwards. Keep the good thoughts going her way!

We did our usual introductions. Tonight, John related to the group our experience of going to Stanford to become test subjects for a small device that attaches to the ostomy bag that is designed to alert the wearer if the bag is full. Both John and I have had some problems with it, but as I said, this is what the test program is about. The group of researchers are working on a device that attaches to an Ostomy bag to alert the individual that the bag is full. This is a four-week study where you would have to go to Stanford at least twice, then you get to keep the device. This device will communicate with a “Smart Phone” (read Iphone) to provide the alert. More information can be found at aim.stanford.edu/ostomy.

We welcomed Belvia, who is going to have a Colostomy and her daughter Marisa to our group. Jennifer brought up the WOCN Nursing program at San Jose State, slated for later this month. We had volunteers for Colostomy, Ileostomy and we will ask Virginia to volunteer for the Urostomy. Jennifer will confirm the date and contact our volunteers!

There was discussion regarding the upcoming UOAA 6 th National Conference, August 22 nd to the 26 th, 2017 in Irvine, California. Copies of the conference program were handed out. John told us he had already made his reservation for the conference and the cruise he and Linda are going to take as part of it. If you are interested in going, click here. Reservations can be made now.

Several members paid their annual dues. While the group does not have a lot of expenses, the liability insurance, ($500.00/year), the phone and a few other items needs our help. Dues were set at $20.00/year to cover these items. If you can, please help and pay your dues, thank you…If you are unable to make the meetings, you can email me for an address so they can be mailed in. Thank you…..

Please remember you can find the dates of our 2017 meeting schedule on our Web Site. Please look at http://svosg.org for that information.

Next meeting is April 11 th in the Rosalie Rendu Room. We start at 7:00 pm. The meeting was adjourned at 8:25 pm.

What happened at our February 14th Meeting

Meeting Minutes

The February meeting was called by to order at 7:05 in the Rosalie Rendu Room by Crystal. 14 people were in attendance for the meeting.

Jennifer is having some issues and is not feeling good. Keep the good thoughts for her.

We began the meeting with a short presentation from Dara Rouholiman from Stanford. His group of researchers are working on a device that attaches to an Ostomy bag to alert the individual that the bag is full. This is a four-week study where you would have to go to Stanford at least twice, then you get to keep the device. This device will communicate with a “Smart Phone” to provide the alert. More information can be found at aim.stanford.edu/ostomy.

Introductions were made and tonight we had a new member who is researching what it is to have an ostomy. Brian has bladder cancer and is waiting for the next biopsy to decide what to do. He sounded very positive and we welcomed him to our group.

Burt related his experiences since having Ostomy surgery in October of last year. He appreciated the openness of our meetings and felt he could ask any kind of question without worrying about embarrassing someone.

Thanks to the thoughtfulness of Linda and Annette, we had special snacks to celebrate Valentine’s day. They were great.

There was discussion regarding the upcoming UOAA 6th National Conference, August 22nd to the 26th, 2017 in Irvine, California. Copies of the conference program were handed out. John told us he had already made his reservation for the conference and the cruise he and Linda are going to take as part of it. If you are interested in going, reservations can be made now.  Learn more about event

Several members paid their annual dues. While the group does not have a lot of expenses, the liability insurance, ($500.00/year), the phone and a few other items needs our help. Dues were set at $20.00/year to cover these items. If you can, please help and pay your dues, thank you…

Please remember you can find the dates of our 2017 meeting schedule on our Web Site. Please look at http://svosg.org for that information.

Next meeting is March 14th in the Rosalie Rendu Room. We start at 7:00 pm.

The meeting was adjourned at 8:20 pm.

What happened at our January 10th Meeting

Outstanding handbook produced by Vancouver Ostomy Support group – Download & Print.

Outstanding handbook produced by Vancouver Ostomy Support group

Outstanding handbook produced by Vancouver Ostomy Support group – Download & Print.

The January meeting was called by to order at 7:05 in the Rosalie Rendu Room. Ten people were in attendance for the meeting. Jennifer is having some issues and is not feeling good. Keep the good thoughts for her.

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. Crystal talked briefly about the 2017 dues raised to $20.00/year. The reason for that is we now must have liability insurance to be able to use a room at O’Connor Hospital. The cost for this insurance is $500.00/year. Annette, our treasurer is keeping track of this for us.

Introductions were made of the group and a brief history of why each of us attend. This evening, we had two new ostomates join us. Cynthia and Frank. We welcome you to the Silicon Valley Ostomy Support Group and look forward to assisting you in any way we can.

Two members of our group celebrate birthdays this month. Happy Birthday to Sharon and John! I would like to extend a Happy Birthday to our members. The only thing I need is your birth date, month and day will do just fine.

Tonight, California is trying to make up for lost rain and I think a lot of people simply did not want to be out in the rain. Hopefully, February will improve a bit.

The UOAA National Conference this year will be in Southern California. August 22 – 26. If you are interested in going, reservations can be made now.  Click Here to learn more.

Please remember you can find the dates of our 2017 meeting schedule on our Web Site. Please look at www.svosg.org for that information. Speaking of our Web Site, I want to thank Paul for his support and talents as our Web Master. We could not do it without your help! The meeting was adjourned at 8:20 pm.