2022 Meetings | Silicon Valley Ostomy Support Group

**What Happened at our December 13th Virtual Meeting**

The December 13th meeting was called to order at 7:07 pm on Zoom by Crystal. 16 people were in attendance for the meeting.

Tonight, we were joined by Collin Jarvis. Collin is a Vice President for SteathBelt. Collin suffered with Ulcerative Colitis while a student at CAL Berkeley. In addition to his studies, Collin had a love for long distance running and ran on a scholarship at CAL. Collin lost over 30 pounds, a great deal when he was running long distance. He also had to receive blood transfusions, so he knew something was wrong. Surgery came about and he woke up with an Ostomy. During this time, a professor named Dan Mulhern told him something that changed his life. “Only Challenge Produces the opportunity for Greatness”. That provided the push Collin needed and started a company called, “Hurdle Barriers”.

Hurdle Barriers, LLC was founded in 2016 and is dedicated to helping people facing serious medical issues maintain, or return to, a healthy lifestyle. We do this by investing in existing businesses and funding start-ups. In addition to providing capital to grow the business we partner closely with existing management to develop long-term strategy and improve current operations. Our model is pretty simple. It starts with finding business owners who have a passion for helping others and a top-notch product that requires additional resources to reach more people. We concentrate on smaller companies in niche markets because of the investment opportunity that they present and because they focus on people who have been underserved by larger companies. We believe in the concept of doing well by doing good. From Hurdle Barriers, Collin’s next move was to StealthBelt.

Collin opened up a Power Point presentation about running and his trip to New Zealand. He did this to get his life back on track after his ostomy surgery. Collin talked about how wearing the StealthBelt has allowed him to go back to his love of running, and run he does, always wearing the StealthBelt. The StealthBelt allows him “to go Anywhere and Do Anything”.

If you need Ostomy Supplies, call Kathy…..

Kathy Riccardi

(510)351-8444

Thrifty Medical Supply

21120 Redwood Rd

Castro Valley, CA 94546

Meeting was adjourned at 8:27 by Crystal. The Board Members would like to wish you all a very Merry Christmas and a Happy New Year. See you in 2023!

Regards,

Dave Bunger – Secretary, Silicon Valley Ostomy Support Group

**What Happened at our November 8th Virtual Meeting**

The November 8th meeting was called to order at 7:05 pm on Zoom by Crystal. 16 people were in attendance for the meeting.

This evening we were joined by Daniel Ward, Territory Manager, Northern California/Reno Representative for ConvaTec. Sherri Gordon joined us a bit later in the meeting. We also welcomed Harriett and Israel to our meeting.

A question came up about clothes. www.OstomySecrets.com is a place to start.

Daniel is relatively new having been with them for 6 months. Daniel told us that ConvaTec’s concept is a No Frills approach to Ostomy Care. He spoke about the ConvaTec Me + program. Dan can be reached at 1-925-276-3103 and email at Daniel.Ward@convatec.com. Sherri Gordon can be reached at 1-877-688-2729 or email at SherriGordon@180Medical.com.

What is me+?

me+ brings you the tools and advice to help you make life with an ostomy completely your own. The products and support you need, the tips and advice you can learn to use, and a community you can grow with.

Do you need to speak with an ostomy nurse about your product or skin care? ConvaTec has 33 Ostomy Nurses on Staff if you need help.

The ConvaTec me+™ team now offers complimentary virtual telehealth services.

Have your ostomy care questions answered by a board-certified ostomy nurse through visual support or live demonstrations.

Call our me+ support team at 1-800-422-8811 to request an appointment today. *

Ostomy Telehealth Services from me+™

How does Telehealth work?

ConvaTec referred visits are free**

All appointments are with a Board-certified ostomy nurse
Available in all 50 states
HIPPA Compliant – your information is private and secure

Who can benefit from telehealth?

People with leakage concerns
People who have had difficulty finding the right ostomy product
People with skin care problems around their stoma
People who do not have easy access to an ostomy nurse
People who live in rural areas
People who are limiting their exposure to others
ANYONE WITH AN OSTOMY WHO HAS QUESTIONS AND WOULD BENEFIT FROM VIRTUAL SUPPORT.

If you would like to learn more about scheduling a free me+ virtual support session, please give us a call at 1-800-422-8811 or email cic@convatec.com.

*me+™ virtual support is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

** Telehealth visits will be managed through ConvaTec partner, Corstrata.™ Only visits scheduled through a ConvaTec referral are complimentary.

I have changed my employment recently & I am at Thrifty Medical Supply in Castro Valley now. I can still order your supplies to drop ship like usual & bill Medicare for your reimbursement. You can call me at (510)351-8444 or email your order now to: castrovalley@thriftymedicalsupply.com ATTN: KATHY (in subject line)

Please call me if you have any questions or concerns.

Thank you,

Kathy Riccardi

(510)351-8444

Thrifty Medical Supply

21120 Redwood Rd

Castro Valley, CA 94546

Colin from SteathBelt will be with us in December.

The meeting was adjourned at 8:23 pm by Crystal.

Regards, Dave Bunger, Silicon Valley Ostomy Support Group Secretary.

**What Happened at our October 11th Virtual Meeting**

The October 11th meeting was called to order at 7:05 pm on Zoom by Crystal. 15 people were in attendance for the meeting.

This evening we were joined with Theresa & Bruce Johnson. They are the owners of Stomagienics.

“Stomagienics, Inc., founded in 2014, develops medical devices and methods to improve the lives of ostomy patients. Inspired by an invention by ostomy patient and family member Liney Guidry, the company has developed a family of products including the StomaGenie disposable capture cartridge and SecurPress focused on ostomate health and hygiene.” If you have any questions, please call Theresa at 1-844-696-7866.

Take a Look at the following App…..

My Ostomy Journey App,

Twelve years ago, Sarah had ileostomy surgery after living for years with ulcerative colitis. Ostomy surgery has allowed Sarah to get back to eating foods she loves, and she says “it has been the best thing for me.”

Sarah now eats many of the same things she did before her ileostomy and enjoys them more than ever. Here are some tips that Sarah has learned over the years for eating, digestion and activity.

- Drink up. Hydration will always be an issue, so drink lots of water. I like to toss in a slice of lemon for a little extra flavor.
- And chew some more. If it looks the same coming out as it did going in, you need to chew those foods better.
- Start slow and build up. If you’re right out of surgery, you might be more sensitive to foods than you will be six months down the road. Use trial and error to see how foods work for you and be sure to track the results. If you’ve had ileostomy surgery, add high-fiber foods back into your diet gradually to make sure you can digest them well. These include raw fruits and veggies (especially with skins), nuts, seeds and popcorn.
- Input always makes output. With an ileostomy, your stoma is going pretty much all the time, so it’s important to track and manage your input and output. For example, if I was going on a job interview, I would not eat a big meal right before, because my stoma may create output and my pouch would fill up – and you don’t want that during an interview!
- Do what you love! I go on bike rides, I go boogie boarding. It may take a little time and tracking to know what works best for your body, but you can do all those things and keep your stoma safe.

Sarah, with the help of the My Ostomy Journey App, now has the ability to track everything digitally. She can also use the app to contact someone for additional support, or if she has any questions.

Sarah says, “The My Ostomy Journey app makes it easy for us to keep track of whether we’ve had enough water or what foods we eat. I wish I’d had this resource right after surgery, especially when I was first figuring out what does and doesn’t work for my body!”

Ostomy Advocates Point to Research to Demand Better Patient Healthcare

UOAA Press Release:

Ostomy advocates are fed-up with heartbreaking patient care stories and have produced a new policy paper to call for “systemic change.” The report spearheaded by United Ostomy Associations of America (UOAA) and published in the May/June issue of the Journal of Wound, Ostomy and Continence Nursing (JWOCN) shows “substantial evidence in research” validating recognized standards for ostomy care.

“We should not see another person afraid to leave their home because of preventable leaks, use duct tape to attach their colostomy pouch, or feel alone and unable to cope after this life-saving surgery,” says co-author and UOAA Advocacy Co-Chair Joanna Burgess-Stocks, BSN, RN, CWOCN. Burgess-Stocks, who has been living with an ostomy since age three says, “It’s heartbreaking and does not need to be this way.”

The report shows that when this “underserved patient population” receives the standards of care outlined in the Ostomy and Continent Diversion Patient Bill of Rights, outcomes greatly improve. UOAA estimates 725,000 to one million people are living with an ostomy or continent diversion in the United States, and approximately 100,000 ostomy surgeries are performed each year. Ostomy surgery diverts bodily waste into a specially fitted pouch also known as an ostomy bag applied adhesively around a surgical opening called a stoma.

News reports in January of this year revealed that this underserved population may even include 24-year-old former “Jeopardy!” champion Brayden Smith, who passed away following colorectal surgery for ulcerative colitis. NBC News reported that his parents are alleging that “nursing staff failed to prepare him for life with a stoma including properly fitting him for equipment or helping him to order supplies.” This alleged lapse in care resulted in ostomy bag leaks “causing Brayden’s waste to get all of his body,” the report details. And in written testimony certified ostomy nurse Tara Michelle Bohannon stated that the nursing staff’s role was “well-below the standard of care.”

“As colorectal surgeons who care for patients with ostomies and continent diversions from the beginning and throughout their healthcare journey, the American Society of Colon and Rectal Surgeons fully endorses the Ostomy and Continent Diversion Patient Bill of Rights; Research Validation of Standards of Care,” says Jenny R. Speranza, MD, FACS, FACRS, Chairperson, Professional Outreach Committee of the American Society of Colon and Rectal Surgeons.

“We believe that by acknowledging these best practice guidelines, validated through evidence-based research, individuals with ostomies and continent diversions everywhere will have better access to the essential care they deserve. Through United Ostomy Associations of America’s, tireless advocacy, education, and championing of Ostomate Rights, this Patient Bill of Rights will bring high quality care to the forefront of the healthcare community,” says Speranza.

The white paper also addresses existing healthcare disparities in the care received by patients in rural areas and the prevalence of facilities around the country without a certified ostomy care nurse on staff.

“The Ostomy and Continent Diversion Patient Bill of Rights and the white paper substantiate that whether one has their ostomy surgery at a quaternary care hospital or a much smaller institution in the middle of the country, a basic level of care, and principles thereof, should be the pillars of ostomy management for all,” says Richard Rood, MD, FACP, FACG, AGAF, FASGE Professor of Medicine, Washington University School of Medicine, St Louis. Dr. Rood has himself lived with an ostomy for 52 years and serves as Chair of UOAA’s Medical Advisory Board. “This quality initiative will guarantee an improved quality of life for our patients and lead to cost savings as well,” Rood says.

The white paper cites research that shows “patients who receive proper education have less complications, less hospital readmissions and higher quality of life scores.”

The authors also validate guidelines to address cultural needs and isolation and the emotional toll of surgery. “Ostomates report that these challenges are easier to speak about with another ostomate. They favor group learning with peers. Studies have concluded that layperson led self-management education may improve self-efficacy, self-rated health and cognitive symptom management.”

The prevalence of fears and stigma associated with ostomy surgery can put patient lives at risk and the authors hope that the adaption of these best practices will ultimately save lives.

Ellyn Mantell, an ostomate, UOAA advocate, and ostomy support group leader used the Bill of Rights to successfully lobby hospital administrators to start an outpatient ostomy clinic in New Jersey. “It is one thing to recognize a problem, but quite another to be empowered to find a solution. The Patient Bill of Rights empowered me to fight harder for the creation of an Outpatient Ostomy Center to support ostomates adjust after leaving the hospital. Our fear was lessened by the establishment of this center devoted to our care. Without the Patient Bill of Rights, I may have felt limited in what I could accomplish,” Mantell says.

The white paper is endorsed by organizations such as the American Society of Colon and Rectal Surgeons, Wound Ostomy Continence Nurses Society®, World Council of Enterostomal Therapists®, Wound Ostomy Continence Nurses Certification Board®, International Foundation for Gastrointestinal Disorders, Crohn’s & Colitis Foundation, Fight Colorectal Cancer and Digestive Disease National Coalition.

In an endorsement letter, supporters hope research validation “will strengthen the impact and encourage adoption into practice” and align with community health improvement goals set by the National Quality Forum. The research validation also aligns with the Centers for Medicare and Medicaid Services (CMS) recently launched National Quality Strategy, an ambitious long-term initiative that aims to promote the highest quality outcomes and safest care for all individuals with a person-centered approach.

The meeting was adjourned at 8:30 pm by Crystal.

Regards, Dave Bunger, Silicon Valley Ostomy Support Group Secretary

**What Happened at our September 13th Virtual Meeting**

The September 13th meeting was called to order at 7:05 pm on Zoom by Crystal. 22 people were in attendance for the meeting.

This evening we were joined by several new people. Devang V and Israel C. Joining with Devang was his daughter Aditi. We welcome all of you.

Tonight, was a special event. Chloe M, one of our members volunteered to speak and told us her story. She has been an ostomate all of her life. She told us that she has had 13 surgeries related to various issues all related to her digestive track. Through this process, she learned to self-administer her pick line, learn about various drugs that would help and those that did not. While she was going through this, she was in school, elementary, middle, High School, then went on to earn 3 separate AA degrees, then a Bachelor’s Degree from UC Berkeley. At one point, she attended what is called “The Youth Rally”. The Youth Rally is a one-of-a-kind camp experience for youth living with conditions of the bowel and/or bladder system. This camp was scheduled once a year, until COVID screwed things up and they could not meet. It is hopeful that very soon this will change and return to the camp experience.

Their Mission Statement is:

To provide an environment for adolescents living with conditions of the bowel and bladder that encourages self-confidence and independent living.

Choose from several ways to give:

BECOME A YOUTH RALLY COMMUNITY PARTNER

CLICK HERE to download a copy of the Youth Rally Community Partnership Packet and learn about the various levels of sponsorship opportunities.

SPONSOR A CAMPER (or a Counselor, or a Nurse!!)

Outside of campus/program costs, the majority of our donations go to support the costs associated with getting our camper participants to Youth Rally each year. In over 40 years of operations NO CHILD has been turned away due to financial hardship and we appreciate YOUR HELP to continue this pattern!

To provide an environment for adolescents living with conditions of the bowel and bladder that encourages self-confidence and independent living.

More than 30 years after inception, the Youth Rally remains a community for young people to meet others who live with similar medical conditions. Lasting friendships are formed, in a short 5 nights, in an atmosphere that promotes self-confidence and independence. Our campers and counselors alike live with an array of conditions affecting their bowel and/or bladder systems, some of which include:

Ulcerative colitis
Neuronal intestinal dysplasia
Necrotizing enterocolitis
Renal agenesis
Short gut/bowel syndrome
Hallow visceral myopathy
Hirschsprung’s disease
Cancer

Bladder exstrophy
Cloacal exstrophy
Spina bifida
VATER Syndrome
Imperforate anus
Crohn’s Disease
Bowel exstrophy
Hypospadias
Epispadias

Just like Youth Rally camper and volunteer diagnoses vary, so do their management techniques. Some campers and volunteers are able to manage their condition(s) without medical/surgical intervention. The following is an example of some of the additional management methods shared by campers and counselors:

Koch pouch
J-pouch
IV medication
Continuous tube feeding
Ileostomy
Colostomy
Dialysis
Bowel management programs
BCIR (Barnett Continent Intestinal Reservoir)

Intermittent catheterization
Urostomy
Ace Malone
Pull-thru
Mitrofanoff
Total parenteral nutrition (TPN)
Enemas
Indwelling catheter
Irrigation

In addition to recreational programming, the Youth Rally provides educational sessions addressing topics that are common among all adolescents as well as those unique to individuals living with medical and/or physical challenges:

Motivational sessions
Living independently – going to college
Body image and personal Hygiene
Medical diagnosis groups
Peer discussion groups
Diversion/procedure-specific groups

Our October 11 meeting, we are planning to have Stomagienics joining us.

Planned 2022 Schedule of Zoom meetings: NEXT MEETING: April-12, May-10, June-14, July-12, August-9, September-13, October-11, November 8, December-13 – 7:00 PM PDT.

The meeting was adjourned at 8:30 pm by Crystal.

Regards, Dave Bunger, Silicon Valley Ostomy Support Group Secretary

**What Happened at our August 9th Virtual Meeting**

The August 9th meeting was called to order at 7:05 pm on Zoom by crystal. 17 people were in attendance for the meeting.

The August 9th meeting was very reflective of the meetings we used to have at O’Connor hospital. After the meeting started, Crystal went to each participant to ask how were things going. As each person described his or her situation, questions came up, like, “can you say that again, I think that is a great idea”. An exchange of information within the group which I think is great. It was like a family dinner table, people listening, suggesting, and sharing from the heart.

Speaking of family, one of our members, Richard S. recently fell at home, fortunately his wife came in the nick of time, performed CPR, called the ambulance and he was taken to the hospital. He was treated for chest injuries from the fall, then was transferred to a rehab facility. He will be coming home Saturday. He did not have good things to say about the rehab facility.

Our next open meeting like this is slated for December. If you have suggestions for a location, please let me know.

The survey that I sent out using Word, was impossible for some to use. I am going to try again, thanks to Ron G that turned it into a Google Form. Now all I have to do is figure out how to send it. I want to Thank Ron for his help.
A member suggested that we all take a look at the following site:
https://www.meetanostomate.org
I think you will find it interesting

Planned 2022 Schedule of Zoom meetings: NEXT MEETING: April-12, May-10, June-14, July-12, August-9, September-13, October-11, November 8, December-13 – 7:00 PM PDT.

The meeting was adjourned at 8:38 pm by Crystal.
Regards, Dave Bunger, Silicon Valley Ostomy Support Group Secretary

**What Happened at our July 12th Virtual Meeting**

The July 12th meeting was called to order at 7:05 pm on Zoom by Jennifer. 18 people were in attendance for the meeting.

It’s just over six weeks away do you have tickets yet? You’re invited to UOAA’s Virtual Ostomy Symposium on Saturday, August 13, 2022. It will be a day of online education and community building from 10:30 a.m. to 5:30 p.m. Eastern Time (7:30 a.m. to 2:30 p.m. Pacific) including breaks. This event is for the ostomy community, their caregivers, and health care professionals and will include time to connect with sponsor exhibit booths and fellow ostomates.

Ticket holders ($35) will have access to the recorded educational sessions for a month following the live presentation.

www.ostomy.org/2022symposium/

Two more things that come with UOAA membership was Eating with an Ostomy and New Ostomy Patient Guide. Annual membership is $25, and it’s nice to support them, for those who can. They do a lot of great education events. But, these are also available online.

https://www.ostomy.org/wp-content/uploads/2022/02/Eating_with_an_Ostomy_2022-02.pdf

https://www.ostomy.org/wp-content/uploads/2020/10/UOAA-New-Ostomy-Patient-Guide-2020-10.pdf

TSA Presentation

This evening, we were joined by Lorie Dankers and Angelina Rodriguez. Both of these ladies are with TSA in different capacities. Lorie is a spokeswomen for the Western Region and has the overall responsibility for making sure TSA policies are followed at all of the airports she is responsible for. Angelina is an airport Instructor making certain that procedures are being followed at her airport. Lorie made a presentation about TSA procedures. I plan to include her presentation on the July minutes as it had some great information for those who travel.

After the presentation, both Lorie and Angelina took questions from the group, including an incident from Trish and Annette. Both of these ladies had situations that were less than professional at two separate airports. While this occurred some time ago, they both expressed what had happened and what they did at the time. Trish got home and wrote TSA in Washington DC and that letter resulted in the staff at Los Angeles airport retrained.

A Note: I try to keep our mailing list as current as possible. Several people have informed me that they are not getting the emails that I send out. If you know someone in the group that is not receiving the emails, please give them my email address. Since we are not meeting in person, I no longer have the cards to rely on, which had phone numbers I could call. Without that, I am somewhat limited in maintaining the list. Any help is appreciated

Planned 2022 Schedule of Zoom meetings: NEXT MEETING:

April-12, May-10, June-14, July-12, August-9, September-13, October-11, November 8, December-13 – 7:00 PM PDT

The August 9th Zoom meeting we will have Group Discussions. This is your time to ask about anything you want. We will try our best to answer them!

Suggest you take a look at Stomawise Ostomy Support group on Facebook. You might find it very helpful. When I looked at it, I came across the Osto Group. www.Ostogroup.org this is a group that has Ostomy supplies for low income and uninsured people. They have a lot of stuff and from what I saw, their prices are very good!

Introducing MyOstomyLife by Coloplast® Care

Your resource to build confidence in managing life with an ostomy.

Dear Ostomate:

Living with an ostomy and having a good routine for pouch changes is very important. As a part of Coloplast® Care, our product and lifestyle support program for people with ostomies, we are launching a new companion app, called MyOstomyLife.

Please look at the SVOSG Survey that was sent out. The success of SVOSG depends on the member’s input. If you see something that needs to be added, please do so. No one person has all the answers, that is the purpose of the survey. Please complete it and send it to Dave by July 19^th.

The meeting was adjourned at 8:41 pm by Dave

Regards, Dave Bunger, Silicon Valley Ostomy Support Group Secretary

**What Happened at our June 14th Virtual Meeting**

The June 14th meeting was called to order at 7:06 pm on Zoom by Crystal. 22 people were in attendance for the meeting.

Tonight, we welcomed Mark and his wife. Mark will be having surgery in July. The group answered a number of questions, Mark had.

Tonight, we were joined by Retired Lt. Colonel Justin Blum, US Army and is a Board Member of UOAA.

Colonel Justin Blum with Introduction by retired Navy Veteran Douglas R. Stocks

I’ve known Colonel Justin Blum for almost ten years and have learned much of his story over those years. For UOAA’s observance of Veterans Day, I asked Justin to share his story in greater depth. It is typical for us to remember our Veterans as heroes, but we don’t think or even imagine that they also may have been through a life-altering illness or traumatic event resulting in an ostomy. My wife Joanna (an ostomate) and I had the opportunity to spend an evening with Justin and his wife Leah after the Durham Run for Resilience 5K this past October. I was reminded that evening of the hero that Justin truly is, and felt it was time that others knew the story of this humble and well-respected man.

In 1993, when Justin was a Major on active duty in the US Army, he underwent surgery for an ileostomy due to ulcerative colitis (UC) which had progressed to colon cancer. Justin’s ostomy did not slow him down and he became one of the most respected officers in the state of South Carolina and the only member of the Army Junior Reserve Officer Training Corps (JROTC) cadre with an ostomy. Justin has had a highly successful career and life of public service. Justin has faced the gamut of living with a chronic illness, to receiving a devastating diagnosis, to ostomy surgery, to survival and finally triumph.

Here is his story:

In the Fall of 1971, I was a freshman at Morris Harvey College in Charleston, West Virginia. I was feeling the stress of being away from home for the first time in my life and of getting adjusted to college life. I began noticing blood in the toilet after every bowel movement. I told my parents, who took me to a gastroenterologist during my Thanksgiving vacation at home. The gastroenterologist performed a sigmoidoscopy and determined that I had proctitis, an inflammation of the rectum and anus.

I transferred to Rider University in Trenton, NJ, for my second freshman semester to be closer to home, a decision made easier by the fact that Rider had an excellent ROTC program. I suffered with the proctitis and colitis for the next four years with only a prescription for the anti-inflammatory drug Azulfidine to combat the disease. In June of 1975, I underwent my physical exam at Fort Dix, NJ, to go into active duty in the Army. In the course of the physical, the Army doctor performed a rectal exam, and asked, “Do you know what you have?” I acknowledged that I had colitis. In one of those strange twists of fate, my passion for serving the Army outweighed the colitis so the examining doctor wrote “Fit for Duty.”

For the next twenty years I hid my ulcerative colitis from the Army. On days that I had attacks, I would explain that I was feeling bad due to having had too much scotch the night before. Stationed in South Korea in 1976/1977, all too often upon returning to the camp motor pool after patrolling along the DMZ, I would have such severe diarrhea that I could not make it to the latrine and instead would jump into the nearest garbage bin since it was the closest “facility” I could find. I spent the next 13 years seeing civilian gastroenterologists for the colitis and who continued to prescribe Azulfidine. Finally, in 1990, my colitis was so bad I sought help at Eisenhower Army Hospital at Fort Gordan, Georgia where I began seeing Major Armstrong, a gastroenterologist, who informed me that due to my heath condition, resulting from severe flare-ups of UC, he strongly recommended surgery for an ileostomy. My reaction, not unusual I am sure for people receiving this news, was an immediate, “No! Unless I have one foot in the grave with my back against the wall, I refuse to have this surgery resulting in my living with an ostomy bag!” This was twenty years after my first diagnosis of UC in November 1971. However, just a few years later after a colonoscopy, Major Armstrong told me that I needed ostomy surgery as soon as possible.

On February 28, 1993, I had surgery to remove my entire colon due to UC, which had advanced to colon cancer, and I was left with an ileostomy. As was not uncommon in those days, and even sadly still happens today, I had only one session with the ostomy nurse on how to manage my ostomy. The day after surgery, I developed a leak in my appliance and called for the nurse, but no one responded. I looked at myself in the latrine mirror with my ostomy bag hanging down, and I thought I looked like the Elephant Man. After 10 days I was discharged but did not have access to an ostomy nurse or assistance of any kind except for follow up appointments three hours away at Eisenhower Hospital. I wanted to continue to serve on active duty, so I put my mind toward getting in the best physical condition possible. I started walking 9 miles a day, passed my physical fitness test, and was able to stay on active duty. In 1995 I was promoted to Lieutenant Colonel and in 1996 retired from active duty and transferred to reserve status, continuing to work for the US Army as a high school JROTC Instructor.

Life as an ostomate was fine except that I was experiencing pain from irritation of the skin around my stoma and I did not know of any ostomy nurses in the local hospitals and I didn’t know where to turn for help except for the still fledgling Internet of 1996. I was able to find a Crohn’s/Colitis chatroom on AOL (America Online). In that chatroom I was able to talk with numerous people who had either an ileostomy or a colostomy. On one occasion, an experienced ostomate was able to talk me through the steps to alleviate an intestinal blockage saving me a trip to the emergency room. I was able to find an ostomy support group at the local hospital, but because they met at 10:00 AM and I was working an hour away, I was unable to attend their meetings. Despite all I learned from online resources I was still plagued with skin irritation around my stoma site which continued for the next 10 plus years.

Life took a turn for the better when in 2010, I received a letter from the nurse who ran the local ostomy support group, which talked about (the now former) Great Comebacks Program; a national honor program started by ostomate and former point kicker for the San Diego Chargers, Rolf Benirschke. This program recognized people who had lived an exemplary and inspiring life while living with an ostomy. In 2011 I was the recipient of the Tony Snow Public Service Award, a subgroup of the Great Comebacks Program which emphasizes those in uniform living with an ostomy.

However, it was not the award that changed things for me, it was my ongoing communication with the ostomy nurses that I met through this program who eventually solved the problem of the skin irritation and pain that I had struggled with for so many years.

I have accomplished more in my life as an ostomate as a result of the care I have been able to obtain since my story was brought to the national level. If not for my quality of life-improving dramatically as a result of this assistance, these accomplishments would not have become a reality. I owe so much to three WOC nurses: Donna Sellers, Joanna Burgess, and Joy Hooper. I met them through the Great Comebacks program, and they have always offered their help readily. I have now been free from pain for the past nine years.

There are many who do not have the same easy access to professionals that I have had. I am very fortunate! That is why I believe everyone should seek out or become involved with a community of ostomates either through an online support group or hospital-based support group if possible. All ostomates should help other ostomates achieve the quality of life made possible by their life-saving surgery. Having UC and then colon cancer at age 40 meant years of pain and discomfort in my life. Ostomy surgery gave me a new life. Before I retired from teaching, I used my experience with my ostomy to motivate my JROTC cadets, inspiring them to never give up on anything and reminding them they can accomplish anything they set their mind to. I no longer see myself as the Elephant Man, but as a man with a beautiful wife, supportive children and two amazing grandchildren. Life is good!

The UOAA thanks you for your service Colonel Justin Blum and honors your accomplishments!

•1995 – Promoted to Lieutenant Colonel

1996 – Retired from active duty; continued to work for the US Army as an Army JROTC instructor in the United States Army Cadet Command.

•2003- Named the United States Army JROTC Senior Instructor of the year

•2009 – Promoted to Colonel, in the South Carolina State Guard

•2010- Named Volunteer of the Year for the State of South Carolina

•2011- Named US Army JROTC Senior Instructor of the Year for the second time.

•2011 – Named the Tony Snow recipient for Public Service

•2019 – Lawson R. McElroy Award for Engaged Learning

NOVEMBER 7, 2019TAGS: ARMY, IBD, MILITARY, ULCERATIVE COLITIS, VETERAN, VETERANS DAY

Justin shared his story with us and he has a unique ability to tell his story with humor. Anyone that has an Ostomy, would appreciate his ability to bring humor to a serious issue.

One item he mentioned that in my mind stood out, was the need to have a Village for support. None of us can do it all on our own, we need help. The Silicon Valley Ostomy Group is our Village and we are here to help one another! We Thank Colonel Blum for his presentation!

Planned 2022 Schedule of Zoom meetings:

April-12, May-10, June-14, July-12, August-9, September-13, October-11, November 8, December-13 – 7:00 PM PDT

The July 12^th Zoom meeting we will be joined by TSA. Lorie Dankers and Angela Rodriquez are scheduled to join us.

The meeting was adjourned at 8:41 pm by Crystal.

Regards, Dave Bunger, Silicon Valley Ostomy Support Group Secretary.

**What Happened at our May 10th Virtual Meeting**

The May 10th meeting was called to order at 7:03 pm on Zoom by Crystal. 26 people were in attendance for the meeting.

Tonight, we were joined with Michael Gerald, PhD. Michael has been an Ostomate most of his life. He earned his Doctorate and is an Assistant Professor at Utah State University. Michael spends a lot of his time working with people with Disabilities and helping them achieve greater things in life. He knows what it is to suffer with Disabilities and had a major change in his life when he attended a Youth Rally. This annual Rally is for kids with Disabilities.

Michael’s email is michael.gerald@USU.edu

Michael mentioned a number of significant points for people dealing with chronic illness and or a disability.

•Acceptance is the highest goal.

•Elements of adjustment or a response to a disability is based on the following:

•Family Adaption

•Quality of Life

•Adherence to management recommendations

•Health Information

•Multicultural Issues

• Factors in the disability that influence an individual’s response to disability:

•Time of onset

•Type of onset

•Two types of Response

•Adaptive Response

•Maladaptive Response

•Loss of status

•Loss of social support

•Loss of Function

•Loss of Control

•An interesting statement from Michael:

•“Just because something happens that is gross, does not mean I am gross!”

A question came up about contacting Coloplast. Please contact Paul Hutchinson at coloplastusphut@coloplast.com.

A Note: I try to keep our mailing list as current as possible. Several people have informed me that they are not getting the emails that I send out. If you know someone in the group that is not receiving the emails, please give them my email address. Since we are not meeting in person, I no longer have the cards to rely on, which had phone numbers I could call. Without that, I am somewhat limited in maintaining the list. Any help is appreciated.

The Phoenix Magazine is a great resource for anyone with an Ostomy.

UOAA 2022 VIRTUAL OSTOMY SYMPOSIUM

An Interactive Day of Education, Networking & Fun!

Mark your calendar! UOAA invites you to join us on Saturday, August 13, 2022 for a virtual interactive day of education and community building. It will be held from 10:30 a.m. to 5:30 p.m. Eastern Time (7:30 a.m. to 2:30 p.m. Pacific) including breaks. This event is for the ostomy community, their caregivers, and health care professionals. The Symposium will include a keynote address by a comic living with an ostomy, inspirational speakers, concurrent educational sessions, general sessions, as well as opportunities to connect with fellow attendees and our sponsors. Session topics will include sex and intimacy, peristomal skin issues, what’s new in the ostomy world, advocacy, travel, nutrition and more topics to be announced!

Registration Opens June 1st!

Exclusive Platinum Sponsor

(Please contact christine.ryan@ostomy.org for sponsorship opportunities)

Planned 2022 Schedule of Zoom meetings:

April-12, May-10, June-14, July-12, August-9, September-13, October-11, November 8, December-13 – 7:00 PM PDT

The June 14^th Zoom meeting we will be joined by Justin Blum, UOAA Board Member for a humorous evening.

The meeting was adjourned at 8:37 pm by Crystal.

Regards, Dave Bunger, Silicon Valley Ostomy Support Group Secretary.

**What Happened at our April 12th Virtual Meeting**

The April 12th meeting was called to order at 7:02 pm on Zoom by Crystal. 19 people were in attendance for the meeting.

Tonight, we were joined with Sherri Gordon, Senior Ostomy Territory Specialist

And Jill, RN, BSN, CWON from ConvaTec. Jill described to us the elements of the ConvaTec Me+ fitness program and led us through some of the elements in the Phase 1 & 2 parts of a program developed for new ostomates. I am going to try to get a copy of their program, but Jill informed us that there are several ways you can use this program right now.

•On You Tube – search for ConvaTec Me+ Phases (1-2-3)

•https://Me plus.convatec.com/articles/meplus-recovery-green-phase1-videos/

(Thanks Raji)

•https://meplus.convatec.com

We welcomed Michael B. to our group tonight. He is a new ostomate and like all of us, is going through the trials and tribulations. Glad you have joined with us.

UOAA’s 8th National Conference-Postponed – Due to the continued concerns with COVID-19 and its variants, and for the health and safety of our conference attendees, UOAA’s 8th National Conference has been postponed until August of 2023. More information regarding our 2023 plans will be provided at a later date.

Planned 2022 Schedule of Zoom meetings:

April-12, May-10, June-14, July-12, August-9, September-13, October-11, November 8, December-13 – 7:00 PM PDT

Join Us on Zoom: Michael Gerald, PhD will be our key note speaker in May.

Michael Gerald PhD, LCMHC, LMHC (Iowa), CRC | Assistant Professor | Rehabilitation Counseling
Utah State University
Department of Special Education and Rehabilitation Counseling

Absolutely! The camp that I volunteer for is the Youth Rally, which is an annual camp for adolescents with bowel and/or bladder dysfunction. Here is the website: https://youthrally.org/

This year we will be meeting virtually again (due to the COVID variant), but we typically meet in Boulder, CO, Seattle, WA, or San Diego, CA.

The meeting was adjourned at 8:37 pm by Crystal.

Regards, Dave Bunger, Silicon Valley Ostomy Support Group Secretary.

**What Happened at our March 8th Virtual Meeting**

The March 8th meeting was called to order at 7:08 pm on Zoom by Crystal. 16 people were in attendance for the meeting.

This evening we were joined by Deanna Anderson, who is a Somatic Movement Specialist. She led us in a series of exercises to develop

My Happy Healthy Pelvic Floor

A strong flexible pelvic floor and surrounding muscles support and help maintain healthy digestive organs.

In our 20 – minute session we will learn fun, easy, and enjoyable movements to improve our awareness of our pelvic floor. We will gently strengthen and tone the important muscles of support. We will learn how good breathing improves our well – being giving us a glow from the inside out. A few of the exercises will be done standing, but most exercises we will do seated in a chair. You will also need a hand towel which we will use for some of the chair movements.

I am thrilled to share with you this fun and meaningful healthy movement session.

Deanna Anderson

Somatic Movement Therapist/Educator RST/E

Performing & Teaching artist @ www.StorytellerProject.org

Thanks to Susan for giving us tax information for anyone that is planning to go to the 2023 National UOAA conference.

https://www.irs.gov/publications/p502#en_US_2021_publink1000178980

Thanks to Dan, a new member for this information.

Are registration and lodging expenses I incur attending a convention, seminar, or trade show deductible? – The registration and lodging expenses you incur attending a convention, seminar, or trade show are generally 100% deductible as long as the event you attend provides, maintains, or improves the skills related to your trade or business.

Keep in mind however that conferences you attend for political investment or personal purposes are not deductible expenses.

Are transportation taxes deductible? If you travel to a conference in the U.S. your transportation (airfare or car), meals (50%), single hotel room and other business expenses incurred at your conference would generally be considered deductible. If you take a personal trip and happened to attend a conference or event while away, you can only deduct the conference fee and other business-related expenses you incurred while at your destination.

The meeting was adjourned at 8:25 pm by Crystal.

Regards, Dave Bunger, Silicon Valley Ostomy Support Group Secretary.

**What Happened at our February 8th Virtual Meeting**

The February 8th meeting was called to order at 7:03 pm on Zoom by Jennifer. 15 people were in attendance for the meeting.

Our planned speaker had to spend some time in the hospital and was not able to join us for the evening.

Jennifer started the meeting by letting us know that UOAA had sent their annual package to see how many people are in our group. That package will be taken to Annette so she can write the check to UOAA. Which brought up the need to talk about our annual dues. We voted on this several years ago and came up with $20.00 annual dues.

Our meeting was a chance to ask questions and listen to suggestions from the group. People mentioned issues with leakage and what they did to fix the problem.

Crystal also mentioned that Professor Vivian Wong, CSUSJ is asking for volunteers from our group for a presentation to the WOCN Program at San Jose State. This is slated for Sunday, March 13, 2022, from 10:00 to 12:30. We need a person with a Colostomy, Ileostomy and a Urostomy to attend. Parking passes are supplied and lunch is served. Based on comments received, this is a nice event to attend. Nurses in the program learn a great deal from asking questions. Please let Crystal or Dave know if you can join this event.

Michael Gerald, Asst. Professor at Utah State will join us May 10^th.

Also, both Sherri and Cyndi from 180 Medical and ConvaTec will be joining us twice later in the year.

UOAA’s 8th National Conference-Postponed

Due to the continued concerns with COVID-19 and its variants, and for the health and safety of our conference attendees, UOAA’s 8th National Conference has been postponed until August of 2023. More information regarding our 2023 plans will be provided at a later date.

The meeting was adjourned at 8:10 pm by Jennifer.

Regards, Dave Bunger, Silicon Valley Ostomy Support Group Secretary.

**What Happened at our January 11th Virtual Meeting**

The January 11^th meeting was called to order at 7:09 pm on Zoom by Crystal. 16 people were in attendance for the meeting.

Crystal started the meeting by going round robin to the group. Each member shared how the new year started, problems they had encountered and, in some cases, the solutions they discovered.

Raji and Jane suggested a couple of items they had found to be helpful. I have added these to our minutes as items that you might find helpful.

Immunity wellness drink – In a cast iron pan, take carom seeds (ajwain), black pepper, turmeric powder, and grated ginger. Once slightly toasted add 1 cup of water and bring it to a boil. Add a little palm sugar. Filter it and give it a dash of lemon juice. Drink this immunity boost wellness drink on an empty stomach first thing in the morning for at least 10 days. It cleanses the gut and helps with building immunity.

Can be used in the night: Warm milk, pinch of turmeric powder and freshly ground black pepper powder with honey — have nightly for good sleep and cold/cough.

One was a laxative that is all natural. Equal parts of Apple Sauce, Wheat Bran and Prune Juice. 2 tablespoons daily as needed. You can buy bran at a health food store or buy it in a cereal at a grocery store.

If you have ideas that you would like to share, please send them to me and I will add them to our minutes.

Alyssa will be our speaker for the February 8^th meeting. She is going to speak about PTSD and Depression.

Michael Gerald, Asst. Professor at Utah State will join us May 10^th.

We are going to work on having Stealth Belt join our meeting.

Also, both Sherri and Cyndi from 180 Medical and ConvaTec will be joining us later in the year.

The Silicon Valley Ostomy Support Group after voting, donated $250.00 to the UOAA inaugural Educational Award for Ostomy Care Nurse Certification.

The UOAA 2022 Annual Conference is slated for the Royal Sonesta Houston Galleria, 2222 West Loop South, Houston, Texas 77027, August 11 to August 13, 2022.

For those who are interested in going, you might find the following interesting. As a member/volunteer of the Silicon Valley Ostomy Support Group, a 501 C3, organization, if you decide to go, this can be a tax write off. I was told that if you itemize your taxes, then you can write it off. Please double check with your tax advisor if you decide to go.

Planned 2022 Schedule of Zoom meetings:

Jan -11, Feb -8, Mar- 8, April-12, May-10, June-14, July-12, August-9, September-13, October-11, November 8, December-13 –

The meeting was adjourned at 8:18 pm by Crystal.

Regards, Dave Bunger, Silicon Valley Ostomy Support Group Secretary.