We’re expanding! Our first meeting at Longs Peak Hospital will be January 3, at 5:00 pm, Conference Room A, 1750 E Ken Pratt Blvd., Longmont, CO 80504. At the request of Longs Peak, our guest will be Melissa Hood of Coloplast. If you missed seeing her at Longmont United earlier this year, now is a good opportunity to come and see samples. The wound/ostomy nurse at Longs Peak will also be in attendance for questions and conversation.
I recently vacationed with the Ostomy United/Survivors group out of Los Angeles. It was so much fun! There were 34 that attended (20 of us had ostomies) and it was great to see the support from family and friends. The ages were between 10 years old and 80! We cruised the Mexican Riviera, and visited Cabo San Lucas, Mazatlan and Puerto Vallarta. Everyone received a travel bag filled with various samples, a tee shirt and schedule of events. There were three days of seminars that were very well attended.
Joe Vega and David Martinez manage the San Gabriel Ostomy Association and the USC Community Ostomy Support Group in Southern California, and they did an amazing job organizing this event. There was a WOCN in attendance for anyone that needed help, and he was available one-on-one for questions. There were presentations on Tips and Tricks (there was a great hack using a sanitary napkin (!) for preventing sweat under your pouch), nutrition with an ostomy, the Power of Positive Thinking, and an evening event for star gazing and learning about the Hubble Telescope. There was also a day excursion to a tequila factory with lots of tasting and visiting around Puerto Vallarta.
The best part of the trip was meeting so many great people and the freedom to talk about, well, everything. Some people had multiple ostomies and it was interesting to see how they cope (one woman had three, a colostomy, urostomy and a nephrostomy on a kidney). There were breakout sessions so that ostomy patients could meet, and a separate session just for spouses and caregivers. I don’t often think about whether to tell someone about my ostomy, but being in such an open and safe environment felt very freeing.
Joe and David are planning another cruise for ostomates and caregivers in May, 2019, this time to the Caribbean. They will have ads in the next Phoenix Magazine, and I’m happy to share any information, if you’re interested. Hope everyone has a wonderful Holiday Season and very Happy New Year!
NEW MEETING TIME AND LOCATION! Starting January 3, new meetings will begin at 5:00 pm at Longs Peak Hospital, Conference Room A, 1750 E Ken Pratt Blvd., Longmont, CO 80504. Our guest for January will be Melissa Hood, from Coloplast. If you missed this information earlier this year, this time could be perfect for those wanting evening meetings!
Don’t forget our December meeting will be lunch at Pinocchios Restaurant at 1751 Hover Street in Longmont at 12:00 noon. Please RSVP to Debra Noel, email@example.com, 717-793-0910.
A big THANK YOU to Karlene Martin from Shield Healthcare, our presenter in November. In addition to ordering supplies, we learned that Shield offers educational materials and support for new and established ostomates.
Know Your Healthcare Insurance and What You Need. This recent advocacy article from the UOAA covers in-depth issues during this season of open enrollments. Topics range from insurance basics and plan types, covered benefits for ostomy supplies, and your medical needs. To help you chose carefully, is an added checklist, 10 Questions To Ask Before You Choose a Health Plan. It’s important for all ostomates to be advocates for their own healthcare, and understanding our healthcare insurance needs is a big part of that.
It’s the end of the year….a good time to clean out supply closets! Many items can be donated. I’ve recently donated extra wafers and some accessories to GoodHealthWill. a local, non-profit medical supply shop. I’ve also sent donated supplies to Friends of Ostomates Worldwide. Two other groups promoted through the UOAA are OstoGroup and Ostomy 2-1-1. Both OstoGroup and Ostomy 2-1-1 also allow you check online for any supplies available that you may need.
A skin care tip from our last meeting was from WOCN nurse, Charles Sloan. For fungal and general skin irritation a good solution may be washing with Hibiclens. I have irritation every summer due to heat and sweat under my wafer, and a cleansing with Hibiclens cleared my skin quickly. If you try this, make sure to rinse it off thoroughly. Of course, should you have persistant irritation, contact your doctor or checkin with a wound/ostomy nurse to have it evaluated.
Did you know our own Debra Noel has a monthly blog? Drop In With Debbie is promoted through Longmont Senior Services, and gives Debbie the opportunity to share her insights and thoughts on life and what we can all achieve. Her columns are inspirational and can help others understand how to reach their own aspirations. We’re so happy she’s a part of our group. Thank you, Debbie!
NEW MEETING NEWS! Starting in January, we’ll be alternating monthly day and evening meetings with Longs Peak Hospital. It’s exciting to see our group grow, and expanding to an evening meeting will allow ostomates another opportunity for support. Day meetings will continue at Longmont United Hospital at 1:00 pm, and evening meetings at Longs Peak Hospital will be at 5:00 pm. Currently, the monthly schedules will be:
***Longmont United Hospital — February, April, June, September, November
***Longs Peak Hospital — January, March, May, August, October
This schedule still assumes social lunches in July and December.
Our mission is to provide encouragement and support to all Boulder County ostomates. We look forward to new growth in 2019!
The Holidays are almost here….Hope you have lots of joy coming your way!
I’ve recently been reading a lot about ostomy reversals, and there’s an article this month from the UOAA, “Facts About Ostomy Reversals“. This article focuses on reversals after colorectal cancer, but the information applies to all potential reversals. Most patients with temporary ostomies will have the ostomy for about 3-6 months, and the hospital stay is expected to be only 3-4 days. Generally much less involved than the original ostomy surgery.
In an earlier post I noted the advertising campaign by lingerie brand Aerie this past summer. This campaign focused on women with disabilities, and one of them was Gaylyn Henderson, who modelled for the brand with a stoma bag. Gaylyn has a passion to provide support, education and awareness for those with chronic illnesses, and has founded the non-profit Gutless and Glamourous to support those efforts. In this interview, Gaylyn discusses her decision to pose for Aerie and the positive awareness that she hopes to achieve. As quoted in the Metro (U.K.) article, “Do not let somebody else’s view of what beautiful is dictate how you view or feel about yourself.” Great advice!
Do you know if you’re getting enough Vitamin B12? I’ve recently been more tired than I want, and Vitamin B12 may be the culprit. There are many articles out there about B12 deficiencies, but I found one at VeganOstomy.ca specifically for ostomates. B12 can be taken in many forms, not just foods, including sublingual and injections. I have several Crohn’s friends that have routine B12 injections and swear they help a lot. If you’re feeling tired or having more weakness than normal, talk to your doctor and request an MMA test (Methylmalonic Acid). It’s the most reliable test for ostomates.
The holidays are almost upon us and, if you’re like me, you’re already getting stressed thinking about presents to buy and/or ship, best ways to travel, how many guests will be visiting, what food to take….the list is quite long! As ostomates, we are really strong people. We’ve survived and can keep going. We can carry our supplies with us and, when needed, change a wafer in no-time flat. And we’re looking forward to some of the chaos with family and friends. Or maybe even NO family and friends (we’ve actually hidden out for a couple of holidays). It’s important to not forget YOU. Take care of YOU, in whatever good way that may be. Plan ahead for something to look forward to…..a movie, or starting a new book. That’s how we can stay strong. Remember to breathe…..and just take a moment.
Our November guest is Karlene Martin of Shield Healthcare. Shield is a leading supplier for ostomy supplies, so bring your questions about ordering and shipping. We meet at Longmont United Hospital, 1950 Mountain View Ave., Longmont, CO 80501, at 1:00 pm in the Gauguin Room.
The first 15 minutes of our meeting will be a presentation by Charles Sloan. Charles is continuing to expand his education for ostomy care for nurses at LUH, and will share his latest updates. Also, there will be time for “Talkin’ with a WOCN”, your opportunity for one-on-one questions with Charles for topics of interest to you!
Jenn Davia, our September guest and Physical Therapist specializing in pelvic PT, gave a wonderful presentation on scar tissue management, ostomy anatomy, and hernias. To avoid hernias, basic core strengthening is important. She noted that three, simple exercises are the most important:
While lying down on your back, place one hand on your breast bone and one hand on the abdomen near your navel
Slowly take a deep breath in and focus on trying to get your hand on your stomach rise while the hand on your breast bone remains still
As you breathe in, the hand on your stomach should rise. When you breathe out, the hand on your stomach should lower
Lie on your back with your knees bent and feet flat on the mat or bed
Contract your pelvic floor muscles by tightening in the vagina
Hold this contraction for the prescribed length of time while continuing your normal breathing pattern
Be sure to perform a full relax in between each contraction. Do not hold your breath
If you find yourself holding your breath, inhale first then exhale while tightening the pelvic floor muscles and abdominals. Continue holding these muscles while you inhale again. When you relax, you should feel both muscles relax
October brings us guest Melissa Hood of Coloplast. The Coloplast story began in 1954 when a nurse’s sister has an ostomy and is afraid to go out in public because she’s afraid of leaks. The nurse, Elise Sørensen, conceives the idea of the world’s first adhesive ostomy bag. Today their idea has grown into Coloplast, and includes Ostomy Care, Contience Care, Wound and Skin Care, and Urology Care. Coloplast products are available worldwide and they are celebrating 60 years of service this year.
Looks like Fall is around the corner here in Colorado. Leaves are falling and there’s already snow in the high country in Wyoming. I love Fall, but I hear the Farmer’s Almanac is predicting a snowy winter for us. Well, this IS Colorado!
World Ostomy Day is sponsored by the International Ostomy Association (IOA) and celebrated every three years. This year’s celebration takes place on October 6 with the theme “Speaking Out Changes Lives“. The aim of World Ostomy Day is to improve the rehabilitation of ostomates worldwide by bringing to the attention of the general public and the global community the needs and aspirations of ostomates. Awareness this year is highlighted by Run For Resilience 5K races in various places around the country and virtually. One way to participate is by providing a Letter to the Editor of your local paper. The UOAA has provided a template for this, and I’ve found it to be effective in the past.
Jeanine Gleba, UOAA Advocacy Manager, notes in a recent article that the most critical component for living well with an ostomy is finding the right type of ostomy supplies. In a 2017 study called Peoples’ Experiences With Pouches (P.E.W.P.) a majority of ostomates felt they did not receive all of the information that they wanted or needed while in the hospital after ostomy surgery, with lacking product information as the second highest category for inadequacy. In particular “about one quarter of the patients were NOT told that there were other products on the market available to them that may work better for their type of stoma or situation”. I agree! About once a year I review what I’ve been using and then contact all the Manufacturers for free samples. Not only are they great to keep as extra supplies, it’s always good to know if an alternative pouching system will work for you.
I’ve recently run across a webiner sponsored by Hollister Secure Start Services for Ostomy Insurance Reimbursement. Topics covered include Medicare, Medicaid, other Insurances, and Managed Care. Coverage limits are also discussed and broken down by type of ostomy and product. I found this webinar to be really interesting, and particularly useful for new ostomates trying the navigate insurance requirements.
Continuing the theme of pouching and supplies this month, I ran across an article in OstomyConnection profiling a man in Tanzania that faced a permanent colostomy. He was looking forward to the surgery, until he realized the expense of his supplies. His story was recently documented in The Citizen Tanzania and highlights that people all over the world are faced with this decision. OstomyConnection has created Kindred Box, a pay-it-forward initiative connecting people who have excess ostomy supplies to donate to those who need them. Additionaly, organizations like Friends of Ostomates-USA, FOW-Canada, and Ostomy211 are useful agencies accepting donated supplies for those that need them.
Have you heard about or seen the latest kerfuffle surrounding the recent Canadian tobacco warning labels? One of them used an image of an ostomy pouch as a deterrent against smoking. Many found the image to be offensive, and a public campaign was able to get that particular label removed from the campaign. I personally found the image quite offensive, and some have noted that perhaps it wouldn’t have been so insulting had it not shown a full ostomy pouch. VeganOstomy has an interesting article profiling this discussion in a recent blog post.
What? It’s September already? We had a really great presentation for our August meeting by our own WOCN, Charles Sloan. He reviewed his talk “Ostomies 101” that he gave to the staff at Longmont United Hospital last month. This presentation was truly excellent. Thank you, Charles!
For September, our guest is Physical Therapist, Jenn Davia, Integral Physical Therapy. Jenn is passionate about women’s physical therapy, and specializes in pelvic PT. She is also a board certified women’s health clinical specialist (WCS). I met Jenn when I learned that she could help to break up my abdominal adhesions after my surgery. Her presentation will focus on scarring after surgery, risks and advice regarding hernias, and exercises for ostomates. We’ll meet at Longmont United Hospital, September 6 at 1:00 pm in the Gauguin Room.
Hope you are all having a good summer! We just returned from a couple of weeks with family in Florida and a Caribbean cruise. Since my surgery I’ve not had to worry about sweating in the heat, but we sure experienced it on this trip. It was a little concerning, but my Hollister wafer held up fine. I read a lot about problems with adhesion in hot, humid weather, and I’m now very sympathetic. Here’s some of the news I found interesting this month:
Joanna Burgess-Stocks, BSN, RN, CWOCN and UOAA Advocacy Chair, has written a number of reports for the UOAA and Ostomy Advocacy, but I think this article, Know Your Ostomy, is particularly useful. Here she addresses the communication problems we have describing our ostomies, and provides tips for explaining things like color, size, shape and location. Included is a handy checklist that can be printed and used the next time you visit your health care professional.
Did you receive the information you needed after surgery while you were still in the hospital? I know I didn’t. I had an “ostomy” nurse that I suspect couldn’t even spell o-s-t-o-m-y. Fortunately, I had the time before surgery to do a lot of homework, so I didn’t need a lot of support. That’s not typically the case, and this survey shows that almost half of all ostomate patients felt that they received inadequate information and communication from their provider at the hospital. Furthermore, the survey shows that the further back you had surgery the MORE information you received. The survey included patients all the way back to 1953, and current patients are receiving less information! This leads to many more questions around adequate patient care and why communication has decreased. There will be follow up surveys to help answer these questions, but clearly there’s much more work to be done to inform patients when they first receive their pouches.
At our recent lunch, we mentioned the blogger Eric Polsinelli of VeganOstomy. Eric writes about his experiences and is a great resource for product reviews. In this article for Shield Healthcare he reports on his trip and invitation to speak at the WOCN 2018 Conference in Philadelphia. He’s a cheerful writer (didn’t like the Walmart noodles!) and his first impression driving into Philadelphia is telling. The article is filled with interesting pictures of his trip. If this is your first time checking out his website, you’ll find lots of things to see.
For those that missed the last meeting, I wanted to give a shout-out to the non-profit healthcare supply group GoodHealthWill. Thanks to Gaylia for sharing this resource. Located in Loveland (with an additional location in Greeley) GoodHealthWill accepts donations of almost all medical supplies and equipment, and offers them for sale at radically reduced prices.