Shortly after starting this blog in 2017, I transitioned it to support the Boulder County Ostomy Support Group. That group is now managed by the Northern Colorado Wound and Ostomy Clinic, so I’m moving back again to OstomyForSeniors. Many of these posts are from the Support Group time period, but I feel they still have a great deal of relevance. Going forward I will focus more directly on advice and information targeted for Seniors (of which I am one!)
Since this is a topic we can all relate to, I thought I’d start with something simple. If you still have some of your colon, you probably won’t have as many issues staying hydrated. But with an ileostomy, where your colon has been removed, you’ve lost most of your ability to absorb fluid efficiently. So you need electrolytes and sodium to help. There are a number of really good products to chose from. Many doctors will just automatically send you to a GatorAid product, but I personally get tired of them quickly. My choices are Propel, DripDrop, and LiquidIV. All are easy to find and purchase. At our support group we had a session on hydration and distributed the following graphic. It’s summer now, so staying hydrated is more important than ever!
Welcome to Spring! Hope everyone has been able to get out and enjoy the warm weather. As more of us are vaccinated, it certainly feels like the world is opening up.
Charlotte Graham, WOCN at UCHealth Anschutz, invites everyone to their next Zoom meeting. They will have a dietitian from UCHealth speak, and requests conversation on foods you like or have problems with. The meeting will take place on Wednesday, April 21, 5:00 pm. Contact Charlotte at Charlotte.Graham@uchealth.org for the meeting link.
The latest version of the Hollister Secure Start newsletter has a simple article for using barrier rings. My personal experience has told me that the difference between paste and rings is that paste, while a good filler for dips and folds in skin, is not an adhesive in the same way that barrier rings are. The exception to that are the Siltac barrier rings that are silicone. Other rings, such as Adapt, Brava and Safe and Simple, can be molded and shaped to fit your stoma. They can even be torn, for example, if you only need them on one side under your barrier. They can be used with both flat or convex wafers, and usually come in two different heights. I apply mine directly to my wafer before putting it on, and I squish the inside part of the ring so that it doesn’t sit quite as high against my stoma. Remember, if you have an ileostomy, it’s quite normal to have absorption of a little fluid while your barrier ring melts around your stoma. I find them a great way to avoid leaks.
I always enjoy getting notifications for the Ostomy Association of North Central Oklahoma. They have some of the most interesting speakers! Their next meeting is on Saturday, April 10th at 10:00 am CT. The presentation will be with Wendy Lueder of the Broward (FL) Ostomy Association on Ostomate Myths, Some Hints and Having some Fun!
Zoom information for this meeting is:
One-click link: Join Zoom Meeting
Meeting ID: 895 8896 8031
Next month, this group will have former NFL placekicker Rolf Benirschke as a speaker at their May 8th Zoom meeting. Save the above link to join, or check out their website at www.ostomyok.org/oanco
Are you aware of the Ostomy 101 app? The founder of this organization is Dawnette Meredith, who I consider a friend, and who I’ve watched as she’s built an amazing tool for all Ostomates. The app is available for both iOS and Android devices, and provides a multitude of links for classes, online support, information and resources. Dawnette is also the supplier for Awesome Ollie, the Teddy Bear with an ostomy!
AND FINALLY…..A SHOUTOUT TO OUR OWN CHARLES SLOAN!! Charles finished his studies at Chamberlain University, and received his Master of Science in Nursing, Family Nurse Practitioner degree! AND he passed his FNP-C Certification!! This is a post-Masters Certificate and Charles met the requirements for all his clinical studies. CONGRATULATIONS! WE ALL LOVE YOU!
What a year this has been! There’s been Covid, elections and fires….oh my! Here’s hoping that your Holiday season is safe and continues to be well. This website will not be updated until after the first of 2021. We are still available at BoCoOstomyGroup@gmail.com, 720-378-8411. Local online meetings are noted on the side bar.
There is a new coordinator for the Ostomy Support Group at Anschutz Medical Center. Her name is Charlotte Graham, email@example.com. She has been a nurse for seven years, and is a newly certified CWON. After the first of the year they will be having virtual meetings every other month.
On October 10th I listened in on a presentation by Dr. Richard Rood, Professor of Medicine at Washington University in St. Louis. Dr Rood has had an ostomy himself since age 13 due to UC. As a gastroenterologist, he was a presenter at UOAA’s 2019 National Conference and is currently Chair of UOAA’s Medical Advisory Board. His career has been focused in treating ostomy patients and lecturing around the country on IBD and current treatments and trends. This presentation included descriptions of IBD and methods of treating it with medications or surgery. The latter part of Dr. Rood’s presentation focused on the current pandemic, as he has moved into treating Covid patients. He described an international registry of data from IBD patients who also contract COVID-19, and he displayed data showing the prevalence of adverse outcomes among Covid patients who take various medications for their IBD. The link for this registry is at https://covidibd.org and you can find a summary of collected data at https://covidibd.org/current-data/ . Additional info about COVID-19 and IBD can be viewed at www.crohnscolitisfoundation.org/coronavirus/adults. This talk was really interesting and I was able to screenshot most of it, so if you’d like a copy, please let me know.
I’ve recently learned of a new telehealth ostomy group, To-Day’s Ostomy Solutions. In addition to appointments online, they also offer pre-surgery education, and they have partnered with all the major suppliers. You can book a session online, but they are only an out-of-pocket service, accepting all credit cards and PayPal.
The UOAA has designed a new Ostomy Blockage Card. Well, it’s not really a card anymore. It’s much more detailed than the previous blockage information, with descriptions of what to expect and how to diagnose a blockage, and comprehensive instructions for healthcare providers should you need to go to the hospital. I think it’s probably better that it’s so comprehensive, but it would be nice to just have a “card” that we could carry with us. Still, if you think you have a blockage, print this out and take it with you. Most of the providers we see in the ER have never seen an ostomy.
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, firstname.lastname@example.org, 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.
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:
Lots of meetings are going online now:
- Saturday, July 11, 1:00 pm, the Ostomy Association of Northern Oklahoma will have Randall Boord, from Hollister as a guest speaker.
- Wednesday, July 15th, 5:00 pm, UCHealth, Anshutz Wound/Ostomy Group
- Tuesday, July 28th, 7:00 pm, Denver Metro Ostomy Group, guest speaker will be me!
If you have an interest in any of these meetings, let me know and I’ll send the links.
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
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!