The Zoom link for the presentation by Dr Richard Rood is now available. He will be speaking next Saturday, October 10 at 9:00 am MT (10:00 CT). Email Bob Baumel, email@example.com, Association of North Central Oklahoma, for the link information, and tell him you’ve received this information from me and our group. Dr Richard Rood was a Keynote Speaker at the UOAA’s 2019 National Conference. He is an advocate for patients with Inflammatory Bowel Disease and patients with ostomies as he is a 50 year veteran ileostomate for Ulcerative Colitis himself. He is Professor of Medicine at Washington University School of Medicine, and attending physician at Barnes Jewish Hospital and Barnes Jewish West County Hospital.
Ostomy Awareness Day
We had a good time at EB Rains Jr Memorial Park last Saturday to celebrate Ostomy Awareness Day. The weather was perfect and we had a nice walk around Webster Lake. This is the 10th Anniversary for Ostomy Awareness Day and it was celebrated around the world. There are many inspiring stories on the UOAA website, and I’m sure they will be posting images from this last weekend. We had a great time! Thanks to Athena LaPera from the “It’s In The Bag” Support Group in Brighton for joining us and suggesting this location!
Surviving a Disaster
I’ve posted this information before, but with all the fires here and in California it seems a good time to repost. This article from the UOAA was posted shortly after the fires in Santa Rosa a couple of years ago. We had a very good friend lose his house in that fire, so it was made real for us. Just last week, the latest fires again threatened Santa Rosa, and we had other friends that had to evacuate. Other than the flood in 2013, we’ve been pretty lucky, but it never hurts to be reminded and prepared. This article from the New York Times is also a good reference for what to have ready in a Go Bag should you have to leave your house in a hurry. I have a small travel bag with supplies that would be good for a week, but not much longer. Always good to remember we need our supplies!
Ostomy Awareness Day – October 3 EB Rains Jr Park, Northglenn, CO 11:00 am
The theme for Ostomy Awareness Day is again Ostomies are Lifesavers. To help raise awareness, I’ve partnered with Athena LaPera. Athena is the ASG Leader of the It’s In The Bag Support Group in Brighton, CO. We’re going to walk around Webster Lake at EB Rains Jr Park in Northglenn, Colorado. The lake is lovely and there are benches all along the path to sit, rest and enjoy the water. We’ll meet at 11:00 am. The lake is not large and easy to walk. Bring a lunch and join us!
UOAA Conference Cancelled
Due to the uncertainty of COVID-19, the UOAA has decided to cancel the biennial conference in 2021 in Houston. They will evaluate and hopefully reschedule for 2022.
Would you like to make a donation this year to the UOAA to celebrate Ostomies are Lifesavers? For a $30 donation to the Ostomy Awareness Fund you can receive this adorable bandana for your pet!
Is your ostomy due to diverticulitis? This article by Ellyn Mantell describes this condition and reasons for getting an ostomy. There are many that can manage diverticulosis (a precursor for diverticulitis) through diet, but when diverticula are inflamed or rupture, serious infection can result. You can follow Ellyn’s story at her blog, More Than My Ostomy.
I have to admit a little sorrow that the UOAA Conference is cancelled for next year. I mean, it’s only every two years anyway! Last year I met Lynn, a woman with short bowel syndrome, and her support dog. As a child, she was diagnosed with Hirschsprung’s disease, but the diagnosis didn’t come easy and was precipitated by a call from her mother to the pediatrician of President Kennedy’s children! In spite of her chronic SBS and the use of TPN (an infusion nutritional therapy), she has traveled and advocates for self-reliance. She thinks of her service dog as a personal ambulance that carries all of her medicine. She’s an advocate for all ostomates and has participated in conferences around the U.S., including with the National Instututes of Health. She’s an inspiration and I’m happy to share this profile of Lynn.
To stay sane over these past few months we’ve been planning visits to the YMCA of the Rockies. Still isolated, but the view is better! This was the view from the Y shortly after the beginning of the Cameron Peak Fire, west of Ft Collins. Surprisingly, the air up there was actually better than it was in Longmont during the worst days. Hope everyone is staying safe.
Hope everyone is staying safe and well. Check out the meeting times for the Denver support groups on the right. As always, if you have questions or need any support, don’t hesitate to reach out.
I recently ran across a post about the history of Coloplast, and that led me to this video. The company was started by a nurse, Elise Sørensen, and her sister, Thora. Thora developed cancer in 1954, that resulted in a colostomy. Based on Elise’s idea, Aage Louis-Hansen, a civil engineer and plastics manufacturer, and his wife Johanne Louis-Hansen, a trained nurse, created the first adhesive ostomy bag. And Coloplast was born. This movie is a little cheesy, but it’s an interesting look at how the supplies we use today came to be.
But wait….There’s more! This was a month of history in the Ostomy World. Hollister also published an historical perspective of ostomy pouches. This article recounts the first stoma ever recorded in 1706. The first patent was granted in 1913 to Mary Manney of Chicago, for a “surgical appliance, which may be secured to the body of a person upon whom a surgical operation has been performed”. Innovation took off starting in the 1950s, but it wasn’t until the 1970s that industry started to take the needs of the ostomate into consideration. Full disclosure — it is continuing today. I am a beta tester for Hollister and love trying new products!
For those concerned about going to see their doctor or visiting a hospital for ostomy questions, Hollister has designed a Resource Site for their users. Included is a Stoma Self-Help Guide, Self-Care plans, and Staying Healthy tips.
And finally…… This was a Facebook post by my good friend and double-ostomate, Joe Vega, who lives in California. As you can see there were many replies to the question “What is the best piece of ostomy advice you’ve received?” Most replies focused on what to do in case of a leak. Use flange extenders! Use pink tape! Use paste! Use calamine lotion! (a very popular response on FB that I think is ridiculous). But I think my friend Joe’s response was the best:
I thought this was an interesting article in the most recent Hollister SecureStart Newsletter. Flat wafers are almost always used when we’re in the hospital after surgery, but there are a lot of good reasons for using a convex wafer. The four myths discussed here are:
All convexity is the same (it’s not)
A convex skin barrier is uncomfortable or even painful (not at all!)
I have to wait to use convexity
If my stoma is level with my skin, I need a convex skin barrier
If you’re having skin issues, it never hurts to try a convex wafer, and you can get some free samples to check them out.
New Products from ConvaTec
The June 13th meeting of the Ostomy Association of Northern Oklahoma had a presentation by Tom Dingler and Lauren Brown from ConvaTec. Tom and Lauren pointed out that ConvaTec has enhanced the technology in many of their products, including updated pouch shapes, improved filters, roll-up clipless closures and peekaboo inspection windows. They highlighted ConvaTec’s line of EsteemTM+ (one-piece) convex pouches, which offer 3 types of convexity: Soft Convex, Flex Convex and Firm Convex. With reference to the following measurements:
Soft Convex and Flex Convex are both flexible but differ in convexity depth (4 mm and 7 mm respectively). Firm Convex has convexity depth 5 mm with a more rigid barrier. Soft Convex and Flex Convex both offer a range of plateau widths, which vary the distance from the stoma that the convex barrier pushes inward on the skin. If you’d like to try any samples of ConvaTec products, please contact Lauren Brown at Lauren.CVTconcierge@convatec.com or 877-585-0470, opt. 7. (credit to Bob Baumel of the Ostomy Assoc of Northern OK for this text)
It’s Hot Outside!
The temps this week are averaging 95-100 degrees every day. We’re lucky that our climate is temperate, but 100 is still 100. Even though we’re all staying inside more than ever this summer, it a good idea to remember to stay hydrated. Hope everyone is staying safe!
Even though we’ve all been avoiding crowds, there are still ways to reach out to the ostomy community. The online meeting for the UCHealth Denver Support Group will be June 17 at 5:00 pm. They are transitioning to a new online platform, so contact UCH-Wound and Ostomy for information.
Also, I’ve been in touch with the Ostomy Association of Northern Oklahoma. I follow the articles of one of their members, Bob Baumel. Their next Zoom meeting is this Saturday, the 13th, at 2:00 PM Central Time (1:00 our time). It will feature a presentation by Tom Dingler, Donna Sellers and Lauren Brown from ConvaTec. Meeting ID: 834 3615 0408 Password: 321518 Time: Saturday, June 13, 2020 at 2:00 PM Central Time One-click join link: Join Zoom Meeting
You may have heard of the very sad, and for many very upsetting, event last week in Great Britain. A young man who had received a temporary colostomy was needing a permanent ileostomy. He declared that he would rather die, petitioned the courts to allow that, and the courts agreed. He was also supported in his decision by his parents. There has been a good deal of conversation about this online, and Susan Burns, President of the UOAA, put out a statement. Here is the article from the Daily Mail. I realize how upsetting this is for many, but think that with the attention it has received that it’s important that people be informed. Here is Susan Burns’ statement:
“Those of us with UOAA are alarmed and saddened to learn that a young man in intensive care in the United Kingdom was granted the right to die based on his past mental and physical struggles living with a temporary ostomy. In my own ostomy support group here in St. Louis a person once chose a similar dark fate by choosing to stop eating. The healing process and path to acceptance in life with an ostomy is too often filled with this feeling of hopelessness. We believe however that the majority of the 725,000 to 1 million people living with an ostomy in the United States and represented by our organization know that “Ostomies are Lifesavers” and have lived full and productive lives. With proper medical care and emotional support, there is nothing most of us living with an ostomy are not capable of doing. We must all do more to eliminate the stigma of living with an ostomy. Please join with the ostomy community by promoting ostomy awareness, especially on Ostomy Awareness Day on October 3, 2020 as we continue to shout the message that “Ostomies are Lifesavers.” We know that change is made through our national advocacy efforts, educational resources, events, online discussion and inspirational stories. Our over 315 Affiliated Support Groups offer emotional support and quality of life advice and are open to all. Join with us so nobody ever feels this lack of hope again.”
Speaking of Bob Baumel in Oklahoma — He recently published an article about ostomy supply expiration dates that I found really interesting:
Ostomy Product Expiration Dates by Bob Baumel, Ostomy Association of North Central Oklahoma, June 2020
Many ostomy products include materials such as adhesives which degrade over time, and therefore have a limited shelf life. Product boxes usually include codes indicating both the manufacture date and expiration date. Here are examples from Hollister and Coloplast:
In the case of Hollister, the first two characters of the lot number (9J062 in this example) denote the year and month of manufacture. Here, “9” is the last digit of the year, presumably 2019 (It might also be 2009 or 1999 but, seeing this in 2020, we assume we aren’t dealing with product that old). “J” denotes the month of manufacture (where “A” is January, “B” is February, etc.), so this product was manufactured in October 2019. The expira- tion date in Year-Month format is shown next to an hourglass symbol; in this case, the product expires in October 2024. That’s 5 years after the manufacture date, so this product is marked as having a 5-year shelf life.
Coloplast labels display both the manufacture date and expiration date explicitly in international Year-Month-Day format, showing the manufacture date next to a symbol that represents a factory, and the expiration date next to an hourglass icon. In this case, the product was manufactured on April 18, 2019 and expires on April 17, 2021. Thus, this product is marked as having a 2-year shelf life.
ConvaTec labels may be marked using a variety of encoding schemes. Sometimes, mainly on newer products, the manufacture date and expiration date are both displayed. However, some ConvaTec labels display only a lot number (where the first two characters encode the year and month of manufacture in the same way as Hollister lot numbers). These labels may not display an expiration date at all. In these cases, the working assumption is to assume a 5-year shelf life, so the expiration date is 5 years after the manufacture date.
As an interesting observation, some products with newer skin barrier formulations have shorter shelf lives than earlier products. For example, Coloplast’s “Sensura Mio” skin barrier, used in all their newer pouching systems, has only a 2-year shelf life (the Coloplast label pictured above is from a box of Sensura Mio pouches). Hollister has traditionally had a 5-year shelf life for most products, as in the example pictured above, but I noticed that a box of Hollister pouches containing their newer “CeraPlus” skin barrier was marked as having only a 3-year shelf life.
Hope everyone is still doing well. Neither Longs Peak nor Longmont United are open for meetings, but I’ve learned that the Support Group at UCHealth in Aurora are having Zoom meetings. The nurse there is Mallory Davis Salas, and she is happy to include new “zoomers”. Their next online meeting is June 17, 5:00 pm. Please contact Mallory at Mallory.DavisSalas@uchealth.org to receive the link. So far their meetings have been on Zoom, but I understand that next month they are moving to a different platform, so I would suggest not waiting till the last minute to get the meeting information, if interested.
Both my husband and I were probably exposed to Covid-19 in early February at an engineering conference we attended in California. I estimate at least 2,000 engineers from the tech centers near Wuhan were in attendance. My husband wants to be tested, but absolutely refuses to have anything put up his nose! Now UC Health is offering antibody testing to anyone that requests it. Here is the announcement from May 22:
Antibody testing and patient care
UCHealth has provided more than 30,000 COVID-19 tests, and now we’re also offering antibody tests for our patients. While there is not enough research at this time to determine whether the presence of antibodies will provide any kind of protection or immunity from the virus, this test will show whether someone has been sick or exposed to COVID-19. Our antibody test is highly accurate and has been approved by the FDA. Interested patients may learn more and schedule a blood draw online.
And Finally — Some Good News!
If you’re not already aware of this YouTube series, it’s a bit of sunshine while we’ve all been in lockdown. This web series was created and hosted by John Krasinski and well, is devoted to lots of good news. Guests have included his wife, Emily Blount, Oprah Winfrey, Steve Carell and the Office cast (hilarious), Lin-Manuel Miranda and the original cast of Hamilton, and many others. Eight episodes are available for streaming, and the show has been so popular it’s been bought by CBS going forward. Here’s to lots of Some Good News!
Hello! Hope everyone is staying safe and well during our time at home. Neither Longs Peak nor LUH are open for outsiders, so our meetings are still suspended at this time. As far as I can tell, supplies are still available and distributors like Shield Healthcare and Byram are shipping normally with no disruptions.
“Where did I learn to stay so calm in the middle of a pandemic? Obviously you’ve never lost control of the end of a colostomy bag after you’ve unfolded it…” credit to Todd Frey, posted to The Real Ostomy Support Group, Facebook
I’ve recently learned of another university survey requesting feedback on experiences with ileostomies, problems, and how you deal with them. If interested, it is through the Department of Gastroenterology at Baylor University Medical Center in Dallas, in conjunction with the UOAA. The survey can be found here: https://www.surveymonkey.com/r/PY2ND2X
Shield Healthcare has posted a number of interesting and useful articles about the COVID-19 virus, face masks (both sewn and not) and tips on staying safe and healthy. One interesting article on their site, “How Does Coronavirus Kill?” outlines the disease progression, and describes how complicated and unusual this virus is. Some researchers note that up to 20% of patients have diarrhea and believe that the virus may be replicated in the GI tract (and noting that if a patient has extreme diarrhea there’s no protocol for testing at this time). Clearly there is still so much to learn, but eventually everything will be known about this virus, and a vaccine will be available for all that want it.
CU Denver posted an article, “Amazing Positives from Pandemic History“. After rolling my eyes (Positives? Really?), I learned that the Black Death of the 1300s helped to end Europe’s system of serfdom, and the diphtheria epidemic launched the Iditarod Sled Dog Race in 1924-1925. Twenty teams of sled dogs transported diphtheria antitoxin vials over 674 miles of ice and snow. The Iditarod Sled Dog Race commemorates the original Nome Serum Run. (by the way, The Black Death was bubonic plague caused by Yersinia pestis, which incidentally is what Colorado prairie dogs get periodically).
Hope you all are safe and well at home. Looks like we’ll all be inside for a bit longer. I’m not really a crafter-type person, but I’ve started organizing and scanning some old boxes of photos…..mostly throwing a lot of them away after reading the book “Secondhand” by Adam Minter. It’s an interesting study in what happens with all our stuff that we give away or recycle, and how it’s often reused in third-world countries. And what happens with all our old photos? Yep, they’re thrown away!
Last week I was supposed to be on a cruise to the Caribbean. Well, we know that didn’t happen! But here’s a picture I took last year on the beach at Ft Lauderdale. It’s now the wallpaper on my computer so I can dream about going in the future!
Speaking of travel, we also had a big summer trip planned to London and Paris in May and June. Of course, all of that is canceled, but I’ve found some really nice websites that have virtual tours of museums.
This site from Travel and Leisure also has virtual tours of museums that you don’t often think about, such as the Guggenheim Museum in New York and the Musée d’Orsay in Paris (where we were going to go).
I’ve mentioned before that I had heard chatter about the new Hollister barriers and pouches. There were many complaints online about how they were failing and were much noisier than the previous designs. They are, however, more environmentally friendly, and use less chemicals. I’d received some of the new bags and didn’t think they were all that bad. Until this last weekend. One of the complaints has been splitting of the plastic, and that’s exactly what happened to me. This episode was on the pouch, but last month I’d had a similar splitting occur on a Hollister wafer, in the clear plastic area on the side of the flange. At the time I thought it was just an anomaly, but now I’m thinking that there clearly are some manufacturing defects with these new products. I’ve sent these pictures to Lori Chester, our Hollister rep, and asked her to send them along to Hollister. FYI, I’ve used mostly Hollister for four years, and only had one other defect in all that time. I’m going to switch to more Coloplast until I think they get this fixed.
Hope you all stay safe and well. I look forward to gathering again when we’re no longer stuck at home.
I’ve been in contact with representatives from both Longmont United and Longs Peak Hospital. At this time, LPH will not allow outside meeting groups. I’ve not heard back from LUH, but would imagine the rules are the same. Our April guest, Lori Chester of Hollister, has also told me that she is not being allowed into the hospitals she services. As a result, I believe we should cancel our April meeting. Please be safe and follow guidelines to stay as healthy as possible.
The UOAA has released a statement regarding supplies. Within this article are updates from Hollister, Coloplast, Convatec, Nu-Hope and Safe and Simple. At this time there are no supply disruptions from the major manufacturers. I’ve check the websites of various suppliers, and it appears they are also receiving products as normal. For peace of mind, you may want to order some extra supplies, if possible. I understand that Amazon also has supplies available for self-pay.
Medicare covers the lab tests for COVID-19. You pay no out-of-pocket costs
If you have a Medicare Advantage Plan, you have access to these same benefits as regular Medicare. Medicare allows these plans to waive cost-sharing for COVID-19 lab tests. Many plans offer additional telehealth benefits. Check with your plan about your coverage and costs.
Medicare covers “virtual check-ins” so you can connect with your doctor by phone or video, or even an online patient portal, to see whether you need to come in for a visit. If you’re concerned about illness and are potentially contagious, this offers you an easy way to remain at home and avoid exposure to others.
UCHealth is offering a Virtual Urgent Care. This service is available to all, whether or not you have any insurance. (this website states there is a fee of $49 to your insurance company, but I believe this has been waived at this time). It’s a great opportunity to speak with a doctor without leaving your home and exposing yourself or others to infection.
Thank you Jennifer Davia for speaking with us last month about core strength and preventing hernias in people with ostomies. Jenn and Charles previewed their presentations for the National Physical Therapy conference taking place in Denver. The exercise handouts that Jenn shared on her previous visit have been placed on our website. I’ve added a new tab “Resources” at the top of the page, with a pull-down for the exercises. Such good information for all of us to have.
At our February meeting there was discussion about the benefits of using a hernia belt. Two suppliers were mentioned:
Both look like good options. The Coloplast product is fairly new, but can be ordered directly from Coloplast. For the Nu-Hope belt, you must call them. Each belt is custom fitted.
Now that we’re well into 2020, it’s a good time to evaluate how we’re taking care of ourselves. Elaine O’Rourke is the creator of the online holistic program “Surviving To Thriving: Overcoming Ostomy Challenges So You Can Live a FulFilling Life”. Her strategy tips remind us to Move, Make it Fun, Schedule Time for Yourself, and Know That You Deserve It. With the advice we received from Jenn, it’s never too late to improve our sense of well-being.
UOAA Advocacy for 2020 is focusing on patient hospital care and followup healthcare. We’ve had these discussions in our group — how fewer and fewer patients don’t get seen by ostomy nurses while in the hospital, and caregivers in rehab facilities have no training at all. This article in the February Wound Management Prevention Journal, “Make Some Noise for Quality Ostomy Care in 2020”, highlights a patient care story that is unacceptable and unfortunately not an isolated issue. I’m pleased to see that the UOAA is using their platform to highlight this issue and can only hope their efforts will resonate in healthcare communities.
The Ostomy Association of Metro Denver is inviting all to attend a presentation by Dr Anthony Canfield about hernias and their repair. Dr Canfield is a general surgeon with experience in colon, abdominal and laparoscopic surgeries, and is considered a leader in general surgery robotic procedures. He conducts monthly training for visiting surgeons. This meeting takes place on February 25, 7-9 pm, at Porter Adventist Hospital, 2525 S Downing Ave in the Convention Center. If you plan on going, please RSVP to Eileen Goldberg, firstname.lastname@example.org or call 303-489-0636