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Our Next Meeting – February 9

The Silicon Valley Ostomy Support Group meets on the second Tuesday of each month in the Rosalie Rendu Room in rear of the cafeteria.

2016 Schedule of Meetings

January 12, February 9, March 8, April 12, May 10, 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 slated for January 12, 2016.   Map & directions to meeting.

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……

What Happened at our December Meeting

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

Dr. Hugh Walsh, MD and general surgeon came to our meeting. After a long day in surgery, Dr. Walsh took questions for about 40 minutes. Dr. Walsh has performed many ostomy surgeries and was able to answer questions about the procedures utilized and why certain things are done the way they are. A few people asked specific questions and Dr. Walsh answered in general terms. Without doing all of the records review and an exam, he could not provide the details. Annette was happy to meet him as he had assisted in her surgery and had never known who he was.  The Silicon Valley Support Group is grateful to Dr. Hugh Walsh for coming to our meeting and we thank him.

We also want to thank Rannie, Wound Care/Ostomy RN for coming to our meetings and answering questions about procedures and techniques.

The Silicon Valley Support Group is in need of a Treasurer. This is not a position that requires a BA in accounting. It needs someone who can make deposits and keep track of the group’s financial program. If you can help with this critical need, please contact either Jennifer or Crystal.

Did you know that there is an IBD & Ostomy Awareness Ribbon? We want to thank Annette for finding out about them, then ordering pins for the group. If you have an interest in having one of these pins, go to www.IGotGuts.org/ibdribbon . The “IBD & Ostomy Awareness Ribbon” isn’t just another pretty ribbon adding bling to blazers for the 1.4 million Americans living with Crohn’s disease or ulcerative colitis, known as Inflammatory Bowel Disease (IBD), and the estimated three-quarters of a million Americans living with an ostomy due to colorectal, bladder cancer, IBD, or birth defects.

If you travel, TSA has a “TSA Cares helpline.” Each airport is supposed to have a Passenger Support Specialist (PSS) who has received training and can provide assistance. You can also download a Notification Card from www.tsa.gov/travel/special-procedures. The card you can download allows you to discreetly notify the Transportation Security Officers of your disability, medical condition, or other circumstances that requires assistance. This card, however, does not exempt you from screening.

A handout was provided by Jennifer and Crystal. “Ostomates Guide for Hospitalization”. This information was compiled by Doctors, Nurses and other Health Care Professionals. Great information that included information about Dehydration and the Ileostomy, The Uncontrolled Colostomy, Urostomy Review, Ostomy Surgery and Depression, Alzheimer’s Disease and contact information for United Ostomy Associations of America. See Jennifer or Crystal for a copy of this document.

The forum then opened up to general questions about appliances and other issues related to ostomies. A great reference is the edgepark Medical Supplies catalog to allow you to see what is available. If you need one, call Edgepark at 1-800-321-0591 or go to www.edgepark.com .

The Silicon Valley Support Group telephone is having problems. It may be that a new number might be required. We are going to do everything possible to get it resolved as soon as possible…..

The Group would like to extend to each member and their families a Safe Holiday Wish for all.

Log on to shieldhealthcare.com/ostomylife to see what’s new.

The meeting adjourned at 8:25 PM

What Happened at our November Meeting

The October meeting was called by to order in the Rosalie Rendu at 7:00 PM by Jennifer. 19 people were in attendance for the meeting. Two new people joined us as they are preparing for Ostomy surgery in the near future.

Next Meeting is December 8, 2015 @ 7:00 P.M. in the Rosalie Rendu Room!

Three of our members went to San Jose State last month to talk to the Nurses who are in the Wound Care/Ostomy program. This program is the only program certified west of the Mississippi River for Wound Care/Ostomy Nurses. The discussion was very informative for all. Rich offered to be their live specimen, but as they were going to have lunch after the meeting, they declined his offer, this time!

The meeting then turned to question and answer period. Our two new people, Alex and Simin introduced themselves and had questions about what they are going to go through. A number of members provided insight as to what questions to ask, BEFORE, the procedure and what to expect when you get home.

Rawnie, a Wound Care RN brought surplus Ostomy supplies to the meeting. She then stayed and provided a number of answers to questions. We welcomed her to the group.

Helynn Rueda from Shield Health Care also joined us. She answered a number of questions about how Kaiser works with Shield Health Care to provide Ostomy supplies for Kaiser Patients.

Helen also handed out an “Ostomy Life Newsletter” which has a great deal of information in it about life after Ostomy. There are Webinars that cover, “How to tell a loved one about your ostomy, travel tips, swimming with an ostomy, how to prevent leaks, stoma care, plus diet and nutrition basics. Additional hints that were offered, types of foods that are good, bad and things to stay away from, (most of the time!)

Hydration tips, drink 8 to 10 glasses of fluid a day (8 ounces = 1 glass) ask your doctor about taking Imodium 20-30 minutes before eating and drinking. Eat foods that thicken the stool like bread, mashed potatoes & pasta. Coffee and Tea interfere with hydration, so do not count coffee or tea toward your 8-10 glasses a day goal.

Log on to shieldhealthcare.com/ostomylife to see what’s new.

The meeting adjourned at 8:30 PM

What Happened at our October Meeting

The October meeting was called by to order in the De Paul Room at 7:00 PM by Jennifer. 23 people were in attendance for the meeting.

As promised, tonight was the annual Bag Change extravaganza. Jennifer, Sharon and Dave each stood in front of the group, and changed their ostomy appliances. Each person explained why they did it a certain way and answered questions. Several new people had joined the group tonight and I think were surprised at what they saw. But it was informational and knowing that a picture is worth a thousand words, a lot of our members saw possibly a different way of replacing their appliance. We had two Ostomy Nurses, Carol from O’Connor and Elizabeth from Stanford that contributed to the event. Both Carol and Elizabeth

took questions and provided wonderful insight to the medical side of things, explaining it in ways that we all understood. Numerous members stated that they had gotten a lot out of seeing how someone changes the appliance.

A short question and answer period followed the Bag Change. Elizabeth and Carol both brought surplus supplies that will be taken to the Santa Clara Ostomy & Medical Supply for distribution to people in need.

On Sunday, October 25, 2015, the Silicon Valley Support Group has been invited to San Jose State, the Wound Care and Ostomy Nursing Program for a seminar. This approximately 2 hour session, ~ 10:00 to 12:30 or so and it allows Registered Nurses who are enrolled in the program to ask people with ostomies questions. We are in need of three volunteers. Several people have volunteered already. The ideal group is that we have one person with each type of ostomy. Please let Jennifer know if you would like to go.

Volunteers so far:

1. Linda S.–I     2. John E.-I    3. Richard S.–I    4. Virginia–U  5.   Dave B.-C

We welcomed part of the Gupta family to our meeting….The meeting adjourned at 8:30 PM

What happened at the September meeting

The September meetingwas called by to order at 7:00 PM by Jennifer. 17 people were in attendance for the meeting. Next Meeting is October 13 – Bag Change planned! Our planned room, Rosalie Rendu, was shrouded in plastic as the O’Connor cafeteria is under construction. We know that the October Meeting will also be moved to the DePaul room down the hall. Keep tuned as we may be there for awhile?!?

The meeting was centered on a lot of questions and answers. Several new people joined us with questions. From the experience level in the room, all of the questions were answered.

A question was asked, How do I find a Ostomy Nurse? Additional information can be found through United Ostomy Associations of America, (UOAA). You can find a Wound Care Continence Nurse by clicking here

On Sunday, October 25, 2015, the Silicon Valley Support Group has been invited to San Jose State, the Wound Care and Ostomy Nursing Program for a seminar. This approximately 2 hour session, ~ 10:00 to 12:30 or so and it allows Registered Nurses who are enrolled in the program to ask people with ostomies questions. We are in need of three volunteers. Several people have volunteered already. The ideal group is that we have one person with each type of ostomy. Please let Jennifer know if you would like to go.

Volunteers so far:

1. Linda S. – I 2. John E. – I 3. Richard S. – I 4. Virginia – U 5. Dave B. – C

For the October 13, Silicon Valley Support Group Meeting is planning another Bag Change extravaganza! Volunteers will be needed to demonstrate the changing of the ostomy appliance. This was a popular item last year and so new volunteers are needed for the October meeting! Please let Crystal or Jennifer know if you want to volunteer! This was a great learning experience for all who attended! With adequate support, this might become the annual October agenda…

Approximately 45 minutes of questions in a round robin manner.

Take a look at our Web Site, http://svosg.org. A new item that we hope is helpful, “Ostomy A to Z.” If you have been curious about terms used, here is a great start.

We welcomed Elizabeth M. and David W. to our group this evening. The meeting adjourned at 8:30 PM

New Resource – Ostomy A to Z

What Happened at our August Meeting

The August meeting was called by to order at 7:00 PM by Crystal. 14 people were in attendance for the meeting. Next Meeting is slated for September 8 October 13 – Bag Change planned!?!

Jim Kisler from B-Lo Solutions was our keynote speaker. His company has developed an Ostomy Pocket which is an attachment that snaps on to an undergarment to make wearing an ostomy pouch more comfortable. There is no sewing as it is designed to snap on. They are available in 3 colors and can be used with any ostomy pouch. The purpose is to help avoid contact with skin and body parts, adds additional support for the ostomy pouch. They can be ordered www. OstomyPockets.com or through Amazon. These pockets are machine washable.

Vivian Wong, RN, Wound Care and Ostomy Nurse from San Jose State Nursing Program joined with us this evening. She answered some questions and then talked about the Sunday Seminar at San Jose State.

On Sunday, October 25, 2015, the Silicon Valley Support Group has been invited to San Jose State, the Wound Care and Ostomy Nursing Program for a seminar. This approximately 2 hour session, ~ 10:00 to 12:30 or so and it allows Registered Nurses who are enrolled in the program to ask people with ostomies questions. We are in need of three volunteers. Several people have volunteered already. The ideal group is that we have one person with each type of ostomy. Please let Jennifer know if you would like to go.

Volunteers so far:

1. Linda S. – I/ 2. John E. – I/ 3. Richard S. – I / 4. Virginia – U/  5. Dave B. – CUOAA-Conf-2015

A reminder was given of the UOAA Conference in St. Louis, October 1-4. This national seminar is very educational and REQUIRES reservations! To learn more about the eveent, or to regiter, click on the image on the right

The October 13, Silicon Valley Ostomy Support Group Meeting is planning another Bag Change extravaganza! Volunteers will be needed to demonstrate the changing of the ostomy appliance. This was a popular item

last year and so new volunteers are needed for the October meeting! Please let Crystal or Jennifer know if

you want to volunteer! This was a great learning experience for all who attended! With adequate support,

this might become the annual October agenda…

Approximately 15 minutes of questions in a round robin manner. We welcomed Michael D. to our group

this evening.

The meeting adjourned at 8:30 PM

What Hat Happened at our July Meeting

The June meeting was called by to o rder at 7:00 PM by Dave. 22 people were in attendance for the meeting.

Helen Rueda from Shield Health Care came with Laura Cox, also from Shield Health Care. Laura is a Ostomy Life Style Specialist and spoke on issues dealing with life with an Ostomy. She shared her story and then took questions from the group. Helen also took questions regarding Ostomy supplies and some of the issues in dealing with hospitals. After the meeting, both Helen and Laura stayed answering questions on an individual basis. Laura star’s in several YouTube Video’s. You can find a lot of information by watching these videos.

Also available for information is a blog at Inspire.com. Easy to set up an account and password, then type in the area you are interested in; in or case, Ostomy and you will see a lot of good ideas….

Art Lee from Coloplast came and talked briefly about and then handed out brochures and some samples. We also had two WOCN Nurses at our meeting. Merribeth and Carol from O’Connor Wound care came and brought surplus supplies that will be taken to Santa Clara Ostomy for distribution to other parts of the world.

A number of people voiced a concern about how ostomy care is taught in the hospital after surgery. The prime concern was that most people are still medicated and do not recall much of what was taught.

A question and answer period followed.

Thanks to Sharon for taking wonderful notes!The meeting adjourned at 8:30 PM

What Happened at our June Meeting

The June meeting was called by to order at 7:00 PM by Jennifer. 16 people were in attendance for the meeting. Our next Meeting is slated for July 14, 2015.

John Roberts from Hollister came to speak to the group. Hollister is a 95 year old company that started as a printing company. In the 1970’s, Hollister developed an Ostomy pouch. John talked about the history of the Ostomy skin barrier. He talked about new products that Hollister is working on, such as the Cera Plus Skin Barrier. He provided numerous samples to the group and handed out a “Hollister Secure Start Form” for those people who were interested in receiving information from Hollister.

A number of people voiced a concern about how ostomy care is taught in the hospital after surgery. The prime concern was that most people are still medicated and do not recall much of what was taught.

A question and answer period followed.The meeting adjourned at 8:20 PM

What  Happened at our May Meeting

The meeting was called by to order at 7:00 PM by Crystal. 20 people were in attendance.  20 people were in attendance for the meeting. The topic this month was Short Bowel Syndrome. Ms. Joanne Stoecker from Shire made the presentation. She explained what Short Bowel is and what its effects are on the body. She presented a number of slides that provided the details of Short Bowel and what can be done to aid the patient in dealing with this situation. She made the suggestion to use Pre Biotics and Pro Biotics to aid in the digestion process. She also recommended Gator Ade G3 as it has a great combination of sugars and salt to help the digestive system. She made the suggestion to do a search on the internet for an Intestinal Rehabilitation Program in the area.

(A Search on Yahoo came up with several; here is the one from Stanford Hospital!) The Stanford Intestinal Rehabilitation and Transplant Program offers advanced treatment strategies for patients with gastrointestinal dysfunction due to short bowel syndrome (or “short gut”). At Stanford Health Care, we provide personalized medical, nutrition and surgical therapies to improve intestinal function and meet the lifestyle needs of each patient. 300 Pasteur Drive 1st Floor, Suite A160 Stanford, CA 94305 Phone: 650-498-7878

In addition to her presentation, Ms. Stoecker provided refreshments for the group.

Crystal presented a synopsis of information from UOAA:

Caring for your Ostomy – Camping with an Ostomy – Wisdom from a Pharmacist – When to call the Doctor or Ostomy Nurse – Vitamin B-12 Replacement Therapy – Special Clothing for the Ostomate – Tap Water vs. Bottled Water – Depends on the Source – Some ABCs of Urostomy Care –

Additional information can be found through United Ostomy Associations of America, (www.ostomy.org). You can find a Wound Care Continence Nurse at the following web address.

Several members of the SCVOG brought in excess Ostomy supplies. The excess was taken by Crystal to Santa Clara Ostomy & Medical Supply, where Kathy Riccardi sends them to developing countries with a critical need.

What Happened at our April Meeting

The April meeting was called by to order at 7:04 PM by Jennifer.  Twenty people were in attendance for the meeting, including Helen Rueda from Shield Health Care. Linda Eells provided snacks to eat for the meeting. Thank you Linda!

On Sunday, April 19th, Jennifer, Virginia and Dave will go to San Jose State University to interface with a nursing class of students who are studying to become Wound Care and Ostomy Specialists.

On September 1-6, the UOAA will hold its 5th National Conference in St. Louis Missouri. The purpose of this national workshop is to present the latest in Ostomy developments to members of UOAA. Events range from Yoga, day 1, to ask the Doc’s, Day 2, to a wide variety of topics related to Ostomy’s. If this has any interest for you, click here.

Introductions were made around the room. People in attendance introduced themselves, spoke briefly about their history and how they were doing.

In the May meeting, a “Short Bowel Expert” will join us to talk about issues related to short bowel and related issues.

Helen Rueda, CWCMS, from Shield Health Care spoke about a provider of Ostomy Products and how they operate. Helen explained how as the primary supplier to Kaiser Hospital, the formulary is currently limited at 35 products. If there is an issue with this, then a patient can go beyond the “formulary” and request an additional product! Contact her at hrueda@shieldhealthcare.com. Also look at www.shieldhealthcare.com for what they offer.

In June, the Silicon Ostomy Group will have a representative from Hollister to speak.

Butt Paste – Boudreaux’s Maximum Strength Butt Paste diaper rash ointment 4 oz was mentioned to help reduce irritation around a stoma.

Virginia – Developed a Sponge Brush to clean a one use bag from the bottom. She took a Sponge brush, and reduced it in size and it works….

Information – Look at https://www.ostomysecrets.com. This is a place to find Ostomy underwear. 1-877-613-6246. Underwear for men and women.

The meeting adjourned at 8:30 PM

What Happened at our March Meeting

The March meeting was called by to order at 7:03PM by Co-President Jennifer. Twenty people were in attendance. The next meeting is slated for April 14, 2015.

Board members were introduced to all in attendance. A motion was then presented and approved for David Bunger to become the new SVLG Secretary. Sharon, SVOSG Treasurer, reminded everyone that the current annual dues are $10.00. Co-President Jennifer also noted that SVOSG is a non-profit organization and if anyone would like to make a donation, it would be much appreciated.

Following announcements, introductions were made around the room and the new people to the group were welcomed. The evening’s discussion centered on experiences that people with Ostomies had and what a new person could expect. Some of the new people were nervous, but as the evening went on, they heard from a number of long-time ostomates who reassured them that they could enjoy life- even with an ostomy.

One of the SVOSG members who is a urostoate, handed out several documents, including a questionnaire asking for people’s tips and tricks for living with an ostomy. That information will be put together in a brochure. She also handed out general information from the UOAA, as well as showed products that she felt would be helpful to those in the group.

In April, three members of the Silicon Valley Ostomy Group will be guest speakers for the WOCN class at San Jose State University. Everyone at the meeting was happy to hear that the WOCN program at SJSU is doing well.

UOAA’s 10th Anniversary will be celebrated at the UOAA National Conference, September 1-6, 2015, in St. Louis, Missouri. The location of the conference hotel is the Hyatt Regency St. Louis at the Arch. Click here for more information regarding the UOAA’s 2015 National Conference

What Happened at our February Meeting

The February meeting was called by to order at 7:00 PM by Crystal. 21 people were in attendance for the meeting.

Introductions were made around the room and the new people to the group were welcomed. The evenings discussion centered on experiences that people with Ostomies had had and what a new person could expect. Some of the new people were nervous, but as the evening went on, they heard from a number of people in the group that an Ostomy is something to deal with and you continue to enjoy life.

Suggestions were made, when you try a new product; try it on the opposite side from your stoma. That way, if your body does not like it, your stoma is still ok! Also, for a person that is going to have an Ostomy, try wearing a pouch for a couple of days to get used to it.

San Jose State Nursing Program now has an Ostomy program. Several members of the support group were invited in January to talk to nurses in training about life with an ostomy. As a result of that, the professor teaching the class informed Crystal that they would like to do this every semester.

A suggestion was made to look at the Vitality Medical site for products;

Also suggested was Osto-EZ-Vent. Call them at 1-888-562-8802. They do send out free samples!

The meeting adjourned at 8:10 PM

What Happened at our January Meeting

The meeting was called to order at 7:00 PM by Co-President Crystal. In attendance were 24 people, including Ostomy veterans and several who are scheduled for Ostomy surgery.

Crystal asked for suggestions for speakers for future meetings and several different suggestions were made.

  1. Surgeon
  2. Supplier Representatives
  3. Mrs. Sally Talley – Ostomy Nurse

The meeting went around the room, with each person introducing themselves and sharing the type of Ostomy they had. The new people also introduced themselves and were looking for suggestions, advice and wanted to know what to expect. One topic that came up was the timing of the suggestion of surgery from a doctor. The discussion did cover some of the various medicines and their effects.

The meeting was adjourned at 8:30 PM.

To Learn more about previous year’s meetings click on menu item: Meeting Archives.