Tuesday, December 9, at O'Connor Hospital in the Rosalie Rendu Room in the cafeteria.
The Silicon Valley Ostomy Support Group meets on the second Tuesday of each month, in the Rosalie Rendu Room in the cafeteria. Persons who have recently experienced surgery or are about to undergo surgery are encouraged to attend, as well as those who support ostomates.
What Happend at our November Meeting
The November meeting was led by Board member Thelma, as Co-Presidents Crystal and Jennifer were both out sick. In attendance were ileostomates, colostomates, and a urologist, as well as those people who support them. There was discussion about an improved appliance from Convetec and newer ones from Coloplast. Encouragement was given to a new ostomate that in time, he would gain the ability to be more independent in changing his appliance. Other miscellaneous things were discussed and all went smoothly. Urostomate Virginia, reported on her, Crystal, and Jennifer being the three members of a panel discussion for the new WOCN program at San Jose State. The three of them were well received with the nurses asking numerous questions and being thankful for speaking to them. It was unanimous by all in attendance that there be a December SVOSG meeting this year. The meeting was adjourned at 8:30 pm.
What Happend at our October Meeting
Bag Change Extraaganza
Twenty six people were at the meeting chaired by Jennifer and Crystal. The meeting was called to order at 7:00PM.
Introductions were made and Jennifer asked everyone if the planned activity, changing of Bags and Base plates, for the evening would cause anyone to feel uncomfortable. There was a concern that since this had never been done at an Ostomy meeting, it might meet with objections.
A vote was taken and as a result, the planned agenda was started.
Three members of the group volunteered to demonstrate how they change their ostomy bag and base plate. One IIeostomy and two Colostomy patients each changed their appliance separately in front of the group while also fielding questions. The purpose of this demonstration was to let other people see how other ostomates do the process, and as a way of sharing tips and tricks.
The response to the “Bag Change Extravaganza” was very positive and it will be repeated in the future.
Extra unused Ostomy products were there and a number of people took advantage of those supplies. A number of catalogs were also available for members to take home.
Historically, the Santa Clara Ostomy Group has not met in July and December. There is discussion that a December meeting might be scheduled if enough people will attend. This will be a question at the November meeting!
Sally Talley, R.N., WOCN, has opened up a Wound Care and Ostomy Clinic and can be reached at 408-559-2296.
The meeting was adjourned at 9:00PM, as extra time had been given for the bag change event.
What Happened at our September Meeting
For our September meeting, a guest visited the group:Marissa Crosetti. She is working with a startup on innovating a better colostomy bag solution. Marissa came to present their idea of an internal bag that would be emptied externally, and to get feedback on the idea. This was the first time the idea had been presented to ostomates. The group asked many questions and then gave their feedback and ideas. Marissa also asked for those willing to fill out an anonymous survey. Marissa was invited back to the group so she can continue learning about life with an ostomy. After our guest speaker, the floor was opened up to general ostomy questions and concerns. Before the end of the meeting, it was announced that the October meeting would be the first annual “Bag Change Extravaganza.” Three people volunteered to change their bags in front of the group so attendees could see how different people approach their appliance change. It was agreed that the October meeting would fun from 7-9 pm, to allow for extra time if needed.
What Happened at our August Meeting
While we had a small turn-out at our August meeting, we did welcome some new faces. The group chit-chatted for a bit, and then moved on to answering questions and addressing concerns. The idea was brought up for a meeting where a few members would change their appliance. This would give everyone an opportunity to see the actual steps and tricks that others employ. It was agreed that it was a good idea and a date would be set at an upcoming meeting.
We had no July Meeting
What Happened at our June Meeting
At our June meeting, Robyn Home, WOCN and Coloplast representative, visited the group. She presented the new ostomy products coming out by Coloplast. A good time was had by all as many in attendance played with some of the new products. After her presentation, Robyn stayed for the rest of the meeting and helped answer questions and concerns of those in attendance.
What Happened at our May Meeting
The May meeting brought in some new faces, including a few who had just had surgery. Attention was given to those who were considering surgery and those who had just become new ostomates. As usual, the group was more than happy to answer questions and dole out advice. Included in the advice was a reminder that summer is around the corner and that ostomates need to be diligent about drinking water to avoid dehydration.
What Happened at our April Meeting
Our April meeting brought in some new faces, as well as the regular cohort. This month was a regular meeting where questions were answered, and issues and concerns addressed. One our members, who has had his ostomy for over 50 years, gave his take on having an ostomy. He feels grateful to have an ostomy because it saved his life, and suggested that overs try to view it in that way. The group was uplifted by his gratitude and advice.
What Happened at our March Meeting
At our March meeting we had a visit from Nick Gritzai, Jr, of Cymed. They are the makers of MicroSkin, which is a transparent, hypoallergenic polyurethane film. There were many questions from those in attendance, with the most common question being “How do you put it on?” Nick gladly showed us how to put on and take off the MicroSkin by demonstrating on his hand. After Nick’s presentation the floor was opened up for questions, issues, and concerns.
What Happened at our Feb. 11th Meeting
Jennifer and Crystal, our Co-Presidents, kicked off the February meeting. We had had 24 people in attendance. The meeting was chaired by Jennifer with a brief introduction by our members on the type of ostomies that they have and their causes. Jennifer provided a tour of the internet, including our SVOSG website and all that it has to offer. We also surfed around ostomy manufacturer websites, the UOAA, Facebook, awestomy.com, YouTube, and newbieostomy.com, which is a website developed by one of our members. We also did a follow up on questions from the attendants for the rest of the meeting on their concerns and issues that they may have.
What Happened at our Jan. 14th Meeting
Jennifer, our Co-President, kicked off the 2014 meeting. We had had 20 people present. The group will be meeting in the De-Paul conference room for the rest of the year. We should be back in the Sister Rosalie Rendu room in 2015.
Our main activity of the evening was responding to questions that members brought about their own care issues. No matter how many years experience one has had with their ostomy, there are new products, tips and tricks, which we can learn from each other. The group felt that on an ostomy reversal it is best to wait approximately 6 months for your body to heal before having another operation, but your Doctor will decide on the best time. Jennifer said something that related to many ostomy issues: Drink, Drink, Drink and Chew, Chew, Chew (and it better be water!) Stoma Care WOCN Nurse and Coloplast representative, Robyn Home, who is a regular attendee of our meetings, shared news about new skin care products and new barrier paste that help to protect the skin around the stoma. She took considerable time responding to the questions from group members, which the group appreciated. Also in passing she said that the Baby Boomers on the internet are demanding change to the quality of life of ostomy patients and forcing the suppliers to come out with better and new ostomy products.
What Happened at Our November Meeting
We had 27 people at our November meeting, since our first co-president Jennifer F. was out sick. Crystal I. chaired the meeting, It looks like we may be getting Goggle Voice for a phone line for 2014 (more to follow on our communications link for our SVOSG members).
Judy Canepn field representative from Active Life Medical Products Inc. she made a presentation on their line of products and they have a wound specialist on staff, she can be reached at 209-943-2118 and she represents the Stockton area, www.Activelifemed.com.
Tim Suit one of our members past away and his wife and daughter brought in a large box of supplies for members and what was left was taken by Kathy R. (Santa Clara Ostomy & Medical Supply) for distribution to others in foreign countries and are given freely and not resold.
One of our members attended the UOAA National Conference Aug 7-10 held at the Hyatt Regency Riverfront, In Jacksonville FL. (Theme was Bridge to acceptance) She brought back handouts and photos of life-size walk-in displays of stomachs with various problems, check out our library display to see the material at our January meeting 2014 meeting.
Our meeting was a sharing/ support meeting on stress related problems because of the kind of foods we eat, Skin problems caused by barrier rings and the type of adhesive and how to remove it, some of our members are still having problems.
The subject of Diarrhea was brought up and the various on how to deal with it and stop it and are to numerous to mention here. All I can say its an individual thing, work with your WOCN nurse/ doctor, if diarrhea is continuous,with signs of dehydration seek help. Our next meeting is on January 14, 2014 Happy Holidays, a very Merry Christmas and Happy new Year and most of all Happy Health.
What Happened at Our October Meeting
The meeting was led by our co-presidents Crystal and Jennifer, and the evening was devoted to questions, answers, problem solving, and sharing what works for ourselves and others. One person had concerns on clothing shirts: to tuck in or out so the bag won’t stick out and be noticeable. The subject of how much water to drink was brought up and the quantity varied among the attendees. A good period of time was spent on the topic of passing gas in meetings, the classroom, and other social situations, and handling the embarrassment that goes along with it. The group had various suggestions in dealing with the gas noise by coughing, speaking at a higher pitch, or just by saying that my stoma is talking again. The group agreed that what it boils down to is being positive- it’s great to be alive, for many the ostomy saved their life, and everyone has good days and bad days. Another topic of discussion was the Transportation Security Administration (TSA) and their searching persons with an ostomy. Some people have had problems, but most had positive interactions. The group was reminded that it’s always a good idea to have the ostomy notification card on your person as it lets the TSA know about your situation. Additionally, it was suggested that ostomates inform the officer before the screening process begins. Another tpic that was brought up was dating: do you tell the person your with on the first date that you have an ostomy? Many felt that it’s best to be open and up front. Overall, the consensus of the group was that it's an individual decision. From that discussion came the topic of intimacy after surgery. Sexual relations are a natural part of life, and for ostomates post-surgery, being patient, being yourself with your partner, and being open to discussing your feelings with your date can help with self-esteem and confidence.
What Happened at Our September Meeting
We had 22 attending the September meeting, including guest speaker Susan Ashworth, RN WOCN nurse from Stanford Hospital. We had one new person who attended with his wife. The gentleman just recently had ileostomy surgery. Also in attendance was Robyn Home, WOCN nurse and Coloplast representative.
The meeting was opened by Co-President Crystal, followed-up with Co-President Jennifer going over some Silicon Valley Ostomy Support Group (SVOSG) business, including getting new phone service. She also reminded everyone in attendance that the SVOSG is a non-profit group and we are in need of donations, which are tax-deductible. The SVOSG does have bills and would like to sponsor some members to attend the UOAA Conference, but this requires funds which are received from members and attendees.
Susan, our guest speaker, started out by telling us about her 25 plus years experience as a WOCN nurse. She then talked about different types of products and accessory items to use for what purpose. She talked about flat vs. convexity and when each should be used. Additionally, Susan shared some very helpful tips with the group (especially for the newer patients): 1) be sure to cut bag opening the correct size and shape of your stoma, 2) after surgery, the stoma can change shape and/or size for up to 8 weeks before stabilizing, so be sure to use a measuring guide for correct sizing each time you change appliance, and 3) change bag every 4 to 5 days on average, don't wait until it leaks because it can irritate the skin! She then took questions from the group. After answering our questions, she proceeded to ask the group questions so she could learn more about being an ostomate. Several members spoke about their experiences, products they like, and tips-and-tricks. Co-President Jennifer reminded all in attendance that our inputs within the meetings are not as health professionals, and if someone is having a medical issue, they should seek professional medical health. Susan finished her presentation with a show-and-tell featuring different types of underwear and stoma body covers. The last fifteen minutes of the meeting we broke into two different groups, one for colostomates and one for ileostomates. Our next meeting is on October 8, 2013
What Happened at Our June Meeting
On June 11th twenty-eight people gathered for our June Silicon Valley Ostomy Support Group meeting. Of those attending, three were with us for the first time.
Our meeting was a sharing/support type meeting. Following the meeting we held a board meeting to elect new officers. Crystal I.and Jennifer F. will share the office of President. Miriam F. will be our Treasurer. Henry C. will serve as our Librarian and will also be our Liaison with O'Connor Hospital. Paul M. will continue to serve as our Webmaster and Cathy R. will serve as our Interim Secretary.
What Happened at Our May Meeting
Thirty two people atteded our May 14th meeting. Of thise eight were first time attendees, six of them being persons having had ostomy surgery within the last few months and one being a person about to undergo an ostomy operation.
With us was Stoma Care Nurse, Robyn Home from Coloplast who is a regular attendee of our meetings. Robyn spent part of the meeting giving advise as to how to take special care during the hot and sometimes humid summer months. She also had special advice for those who take part in summer outdoor activity including swimming and making use of hot tubs and how those activities can effect wafer adhesion. Robyn shared news about new skin care products that help to protect the skin around the stoma. She took considerable time responding to the questions group members brought to the meeting. was a great meeting.
What Happened at Our April Meeting
We had 23 attending the April meeting, including guest speaker Sally Talley, WOCN (Ostomy nurse) from Good Samaritan Hospital. We had 3 new people: A gentleman that has Ulcerative Colitis & he is contemplating surgery for an ileostomy versus a " J "pouch, A lady whose husband just had Urostomy surgery 2 weeks ago & another lady who had a colostomy 6 months ago. We went around to introduce everyone, then Sally started out by telling us about the new WOCN program starting here in our area in September. She then talked about different types of products & accessory items to use for what purpose. She talked about flat vs. convexity & when each should be used. She had some really great tips (especially for the newer patients): 1) be sure to cut bag opening the correct size & shape of your stoma, 2) after surgery, the stoma can change shape and/or size for up to 6 weeks before stabilizing, so be sure to use a measuring guide for correct sizing each time you change appliance & 3) change bag every 3 to 4 days on average ~ don't wait until it leaks because it can irritate the skin! We opened up for Q & A after her presentation.
What Happened at Our March Meeting
We met in our usual location at O'Connor Hospital. There were 16 people preseent at the meeting, includind two people who were new to the group.
The evening was devoting to questions and answers, problem solving, and sharing what works for ourselves and others. Much of the time was devoted to responding to the concerns of the two first time visitors.
What Happened at Our February Meeting
Our first second meeting of 2013 was held at O'Connor Hospital at 7 pm on February 12th. Nineteen people attended our meeting, that was led by our
president, Peggy. One first time attendeee was there in preparation for urostomy surgery that will take place on Friday. A Wound, Ostomy, Continent Nurse was there, and she announced that San Jose State University is launching a WOCN specialty as a part of their Degree Nursing Program.
What Happened at Our January Meeting
Our first meeting of 2013 was held at O'Connor Hospital at 7 pm on 8th. Our president, Peggy presided over the meeting which was attended by fifteen people. Robyn Home, our favorite OWCN Nurse, from Coloplast, was with us and was able to show us some of the newest developments from her company.
Peggy urged all members UOAA Conference which will be held in Jacksonville next August (see below for more information). She also urged those who do not subscribe to Phoenix, the
magazine for persons with ostomies, to consider doing so. For more information and to subscribe, click on the magazine cover that appears in the right hand column.
Fourth UOAA National Conference
August 7-10, 2013
Hyatt Regency, Jacksonville Riverfront
What happened at our November 13th
Twenty-seven people attended our November 13th meeting. Since we did not have a program, we had plenty of time to respond to concerns brought by attendees. One of the attendees is preparing to have a j-pouch converted to an ileostomy, with the surgery to be performed by Dr. Varma at UCSF Medical center
What happened at our October 9th Meeting
We had 22 attendees at our October 9th meeting. Since our President, Peggy was unable to attend, board member, Paul, chaired the meeting. The group spent part of the meeting responding to concerns brought by some of our attendees.
We also had a very positive report from one of our members who attended the United Ostomy Association of Canada's Biennial Conference, which took place in August in Toronto. She said it was an excellent meeting and shared some of the materials and resources that she brought back from Toronto.
What happened at our Sept. 11th Meeting
We had 28 people at our Sept. 11th meeting and two of them were first time attendees. Once more we had Robyn Home with us. She is a wound care specialist who is employed by Coloplast. She gave us more information on the products we learned about last month. She is a super resource to our group and we are thankful she chooses to spend time helping our group. Coloplast should give her a raise.
What happened at our August 14 Meeting
On August 14th, 31 people attended the meeting of the Silicon Valley Ostomy Support Group. Of those, nearly one third were with us for the first time and of that group, half were support persons and of the other half, one was a person who will have surgery at the end of this month. We spent a good deal of time responding to questions brought by these new attendees.
Robyn Home, from Coloplast, was at our meeting to tell us about new developments from Coloplast and to answer any questions support group members had about Coloplast Products. She did one of her great show and tell presentations and each of us left with samples of some of their newest products.
What Happened at our June 12th.
Our June 12 meeting was presided over by our President, Peggy, and it was attended by27 persons, with 9 of those persons being first time attendees (half persons recently having surgery and half being family members).
The meeting was largely a meeting in which persons shared issues they are dealing with and support group members shared experiences they have had in responding to such problems.
What Happened at our May 8th Meeting
Our president, Peggy, could not be with us for our May meeting because of a business commitment. So, Thelma and Paul tried their best to make up for Peggy's not being with us. Twenty-seen people attended the meeting, including two persons who had recent surgery and were with us for the first time. With us for the meeting was Helynn Rueda, who is Senior Territory Representative for Shield HealthCare. Shield is the major provider for Kaiser patients, and she was hear to respond to questions or concerns related to their service to ostomy patients. Support group members can contact Helynn by clicking on her name (above) and sending her an email.
A number of questions relating to ostomy patients without insurance demonstrated a need for our group to schedule a person who can talk about ways in which people without insurance can secure needed supplies.
What Happened at our April 10th Meeting
Peggy, our President, was back with us for our April meeting. It was pouring down rain, and the rain had an impact on our attendance. We had only had 18 people present.
Our main activity of the evening was responding to questions that members brought about their own care issues. It is amazing how much we are able to learn from one another. No matter how many years experience one has had with their ostomy, there are new findings and we can learn about those findings from each other.
What happened at our March 13th Meeting
Peggy, our President was not able to be with us for our March Meeting, so Board member, Paul presided over the meeting. There were 32 people with us at this meeting, 4 of which were attending our group for the first time. The meeting began with quick introductions of those present.
Among the announcements made at the beginning was letting people know that the UOAA (our national parent group) is seeking nominees for several officers and board positions that are to be elected this year. We will have a chance to act upon endorsing any nominations being put forth from our group.
The next segment of our of the meeting was time to respond to questions and concerns brought to the meeting by members. This is a time when everyone learn as the group responds to those concerns. Even the persons who have had their ostomy for the longest time often find new solutions to caring for themselves and their ostomies.
The final segment of our meeting was a presentation by Shelley Goldblum, a representative of the Hollister Corporation. She showed us some of their newest products and answered questions Hollister users had about those products.
What happened at our Feb. 14th Meeting
President Peggy was back with us for our February SVOSG meeting. There were 29 people present for the meeting. two were people attending prior to upcoming ostomy surgery they are about to have.
Our special speaker for this meeting was Samantha Wellman, who suffered man years from Crohn's Disease and had ostomy surgery in 2008. Using Pilantes exercises and nutritional studies, she worked to regain her health. She will share her learnings about using an anti inflammatory diet and use of exercise with us. She is the owner of Samantha Pilates Studio, located in San Jose.
Special PocketMedi Promotion
PocketMedi is running a promotion to get feedback on the features and user interface from patients and families undergoing chronic health challenges. A qualified patient group will receive $100.00/Month for a max of 3 months or till the promotion lasts.
The promotion starts on 20th Feb 2012 and ends on 20 May 2012. This start date can be extended for members of SVOSG.
The promotion is limited to 5 groups, to qualify, register and know more please em ail firstname.lastname@example.org
- Patients have to have 5 or more friends group created through PocketMedi’s Care Network. Larger groups are appreciated.
- Patients and Family members can’t be part of other promotional patient groups.
- Patients and Families have to post Private/Public messages daily or 20 messages per week.
- Create Appointments and Events
- Create and Publish 2 blogs per week
- Load Medicines in Medicine Manager
- Use Notes and Questions to track communication with Healthcare providers
- Use Training videos for Care Management
- Use Maps and Directories to track doctors.
- Use discharge summary in case of patient inpatient admissions
Patients will be provided training & support through a PocketMedi support agent. The Patient/Group activity reports will be emailed to Patients weekly.
Patients have to fill out a 5min survey end of each month & provide feedback over the phone once a month.
our Jan. 10th Meeting
Our webmaster, Paul, presided over our January 10th, meeting. Our President, Peggy chose to not expose the rest of us to the virus that she was fighting, but we missed starting the new year with her at the head of the table.
Seventeen people attended the meeting, two of whom were ileostomy patients who were attending the group for the first time. After a time of introductions, the group spent the rest of the evening responding to questions and concerns raised by those present at the meeting. It was a good meeting, punctuated with a fair amount of laughter.
Free Ostomy Supplies for the Uninsured
It is Osto Group's mission to provide these limited donated supplies to those with no insurance coverage or reimbursement of any type. We will ask you to verify non-coverage upon entering the program and to re-certify it each time you order from us. We do this to assure that we are serving those who are truly in need and not just those who are looking for savings. Learn more by clicking on image to the right.
Should Ostomy Patients Use Public Swimming Pools?
This is a question that was raised in one of our earlier meetings, when a member reported that when he checked at the local community center as to whether he could use the pool while wearing an Ostomy appliance, he was denied use.
Your webmaster, through the UOAA, found a very helpful article in the June 2006 issue of The Aquatic Therapy Journal. The Aquatic Therapy Journal articles are peer reviewed to insure the highest quality information. One of the key conclusions from the article is the fact that, "Individuals with stomas are far less likely to cause contamination of swimming and therapy pools than are those who are anatomically intact."
Having read this article, it would seem that ostomy patients who do as the article suggests should have no fear of using public pools. This may be a case where the best policy is, "Don't Ask & Don't Tell." Or, if you are denied use, you might want to print out and share the article with those who set the rules for the pool.
Here is a link to The Aquatic Therapy Journal article.
A Time Tested Odor Control Method
We are all familiar with the old advice, "take two aspirin and call me back in the Morning." Well, aspirin is also an effective cure for pouch odor. But you don't take it by mouth. Instead, after emptying and wiping the pouch, you simply drop one or two aspirin into the pouch. The next time you empty the pouch the odor will have largely gone away. This method has been around for quite a while, but maybe we need to remind people of this time tested odor control method. Try it, it works.
For best results, use cheap, generic, uncoated aspirin. Use the kind that dissolve quickly.
Travel Information Cards
This is provided to travelers in order to simplify communication with federal Transportation Security personnel and airline flight attendants, at those times when you wish or need to communicate in a non-verbal way, as is your legal right. Download and print cards