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April 2020 News

April 2020 News

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.

Guggenheim Museum New York
Mary Martin in Peter Pan

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.

Meeting update – March 13

Meeting update – March 13

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.

From Medicare.gov

  • 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.
  • More information can be found at Medicare.gov

March 2020 News

March 2020 News

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.

Elaine O’Rourke

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, eigoldberg@comcast.net or call 303-489-0636

February 2020 News

February 2020 News

I’m happy to say that our guest for February is Jennifer Davia. Jenn spoke with our group a couple of years ago and described safe ways to exercise with an ostomy and avoid hernias. She started her career working with spinal injury patients, and is now passionate about women’s health physical therapy. We will meet with her at Longmont United Hospital on February 6th, 1:00 pm, in the DaVinci Room.

Mike Okada, from Native Roots, spoke at the Crohns & Colitis support group meeting in Ft Collins in November. At that meeting he shared this article that compared measurements on a variety of CBD products. The bottom line: most products do not deliver what they advertise, but some come close. In the world of CBD it’s buyer beware, unless you know where the product is coming from.

I subscribe to a number of newsletters from other support groups around the country. Recently there was an article from the Ostomy Association of North Central Oklahoma by their President, Bob Baumel. Bob did an analysis on Trends in Ostomy and Continent Diversion Surgery. This in-depth article notes the current trends in ostomy surgery (temporary ostomies are up, permanent colostomies are down), the populations for each surgery, and the total numbers of ostomy surgeries. These trends are really interesting and support the anecdotal comments that surgeons are resistant to recommending permanent ostomies.

The UOAA has released a new nutrition guide, Eating with an Ostomy. It is currently available only online, but the printed version is expected soon. The guide is expanded with lots of new information including Registered Dietitians and Short Bowel Syndrome. There are also online links for the Emergency Blockage Card and a Food Reference Chart.

In January, we were introduced to the Colorado Cross-Disability Coalition (CCDC). This advocacy group offers multiple training classes in advocacy, grassroots organizing, Legislative Lobbying, benefit systems and more. Courses are available in-person on the DU Campus or online, and scholarships are available. We often forget about taking care of ourselves, and this may be a way to learn about options to improve our lives or the lives of our loved ones.

This is an image I captured from the newsletter of the Ostomy Group of Greater Chicago. I thought it described accessories really well.

AND FINALLY ——– THE NEW OSTOMY CLINIC AT LUH!!!

January 2020 News

January 2020 News

I can’t believe we’re ready for a new year! We had a nice lunch in December at 3 Margaritas in Longmont. It was a great time to enjoy conversations, and we learned about the latest study by our ostomy nurses, Charles and Kelly.

Our next meeting takes place on January 9 at Longs Peak Hospital, 1:00 pm, Conference Room A. Our guest will be Karlene Martin at Shield Healthcare. Karlene always has an interesting presentation, and she may be able to give us a heads-up on new materials expected from suppliers this year.

We will also have Skype call-in at 1-855-637-2079. The ID is 38875 46302 and the PIN is 8461 (Leader will put in PIN). Honestly, I’m not sure how to use this system, so let me know if you’ll be calling in to listen so I can prepare.

There are a number of podcasts available now for ostomates. If listening is your best way of learning they might be something to check out. OstomyConnection has made a list of those they think are most interesting, including:

If videos are more your thing, check out Eric Polsinelli’s reviews and videos at VeganOstomy.

It’s the end of 2019 and organizations are looking for donations. If you have leftover supplies or samples that you’re no longer needing or using, here are some qualified donation services:

Here’s hoping that we all have a wonderful Holiday Season and good health for the year ahead!

December 2019 News

December 2019 News

Our lunch venue for December 5 is changed to 3 Margaritas, 2350 Main Street, Longmont 80501.  Time will still be 12 noon.  Charles and Kelly will talk about their latest abstract submission for the latest patient study at LUH.  And Mexican food!  Hopefully this change will not be too inconvenient. Please RSVP to smbogatin@yahoo.com.  Happy Thanksgiving!

Thank you, Mike Okada from Native Roots, for speaking at our November meeting. Mike gave a detailed presentation on the chemistry and effects of THC and CBD. He did his homework to understand our health issues and was generous in his time to answer questions. If you have any questions for Mike, you can reach him at mike.okada@nativerootsdispensary.com. Also, we experimented with streaming this presentation online. It seemed to go well, so if you think this would be a good thing to do in the future, please let me know.

Don’t have a subscription to The Phoenix, but wish you had? For a limited time, The Phoenix is offering free issues. Just fill out your information here, or give them a call at 800-750-9311.

The UOAA is Looking for Patient Advocates

The UOAA is working on several advocacy efforts that require patient stories and documentation. If you are interested in helping them and meet either of these initial criteria, please contact advocacy@ostomy.org for further details in the hopes you can be a volunteer patient advocate:

1) You are a Medicare beneficiary, and within the past 6 months your supplier submitted a claim for a product that you medically require greater than the allowable limit and the claim was denied. 

OR

2) Within the past 6 months, you were receiving care in a rehab center, nursing home or from a Home Health Agency, and you received very poor, inadequate (quite frankly completely unacceptable) care with regards to your ostomy.  

Telemedicine for Ostomy Care

We know that ostomy nurses are connected with all our suppliers, but I wasn’t aware that there were actual telemedicine groups specifically for ostomies. Telemedicine services can help patients receive remote care and are now offered across the country (services are offered for a fee). Care can be provided for those living in rural areas, in need of immediate consultation, those who are homebound or far away from outpatient ostomy clinics and certified ostomy nurses. Two services listed on the UOAA website are Corstrata and To-Day’s Ostomy Solutions. Both are available in Colorado and can assist with issues such as proper pouching and skin problems, nutrition and supply consultations.

Are you a New Ostomate?

UOAA Advocacy Committee member Susan Mueller, BSN, RN, CWOCN and UOAA Advocacy Manager Jeanine Gleba were recently interviewed by Everyday Health for an article “9 Questions About Living with an Ostomy”. You can read it here. Although focused on new ostomies for Crohns patients, it’s a good primer for all new ostomates.

UOAA Virtual Groups

Unable to attend our terrific group in Boulder County, but want connections with other ostomates? The UOAA has several Virtual Groups, organized within groups and with individuals:

  • Gay & Lesbian Ostomates (GLO), Fred Shulak,773-286-4005
  • Continent Diversion Network (CDN), 215-637-2409
  • Pull-Thru Network (PTN), Bonnie McElroy — pullthru@bellsouth.net, 205-978-2930
  • Thirty Plus Network, Kathy DiPonio, 586-219-1876
  • Jim Murray, Membership #400, 850-982-9936

Six Signs That Clearly Prove You Love Your Ostomy WAY TOO MUCH!!!

This article in Ostomy Connections admits that it wasn’t all love at first sight (or should that be “site”?) when we got our ostomies. Some people love them more than others, but I think we can all agree we’ve made it this far!

Have a great Thanksgiving!

October 2019 News

October 2019 News

Thank you, Erin Palinn, for coming to our meeting in October. Erin is the Registered Dietitian at Longs Peak Hospital, and she did her homework to understand the nutritional needs of ostomates. Our discussion included topics on sodium (should strive for 2,000 mg throughout the day), probiotics (jury is still out on benefits for ileostomates, but research is continuing), protein and collagen (great information on collagen peptides and their daily benefit), and protein drinks with high sugar content (not good! The sugar causes the drink to pass too quickly). We were so happy to have Erin join us, but sad that she’s leaving the Denver area. Good luck on your next adventures!

Mike Okada from Native Roots will be our next guest speaker. Native Roots has expanded and now has multiple locations throughout Colorado and the Front Range. Mike is the General Manager of the dispensary in Longmont. He spoke to our group about three years ago, and this time we have asked him to specifically address questions and concerns surrounding the CBD explosion. We will meet at Longmont United Hospital, Gauguin Room, on November 7, 1:00 pm.

Short Bowel Syndrome Study (SBS)

The UOAA has posted the following information regarding a study for those with Short Bowel Syndrome (SBS):

Takeda Advisory Board Opportunity – Short Bowel Syndrome (SBS)
Takeda will be hosting an advisory board to gather feedback from those living with or caregiving for someone with Short Bowel Syndrome (SBS). The feedback and insights collected from this advisory board will help Takeda shape future materials, initiatives, and offerings for the SBS community. This feedback is critical in helping Takeda best serve the community, and we are currently looking for additional SBS patient and caregiver attendees to participate in the advisory board. In addition to coverage of travel and lodging costs for the meeting, attendees will receive compensation for their time and participation at the advisory board. Criteria for participation includes: 

  • Must be at least 18 years of age
  • Diagnosed with, or caregiving for someone diagnosed with, Short Bowel Syndrome (SBS)
  • Willing and able to share his or her experiences with Takeda and its agents
  • Ability to travel to advisory board location within the continental United States

 If you or your members may be interested in participating in this program, please let them know they can call Snow Companies at 1-844-247-1640 or email Anna@mypatientstory.com to discuss their interest in the program and to see if they are eligible. Please note that candidates will go through a screening process; not everyone screened will be able to participate. We appreciate your help in making interested individuals aware of this opportunity.

Ostomy Dictionary for Travelers

Traveling abroad and want to be able to communicate about your ostomy needs? Want to help someone but having a language barrier? The European Ostomy Association provides a dictionary of ostomy terms in 19 languages. From German to Polish, and even Arabic! It’s published in German, but it’s pretty easy to follow along if you have the English template to follow. Good to have in your suitcase if you’re traveling overseas!

UOAA Advocacy Research Study

The UOAA is conducting its first-ever research study to examine components of UOAA’s Ostomy and Continent Diversion Patient Bill of Rights to demonstrate best-in-practice standard guidelines for ostomy care. The data collected will help to make improvements to the underserved ostomy population. 

They are seeking voluntary participants to complete their survey. They are recruiting as many ostomy patients as possible, including those that are members of ostomy support groups and/or in UOAA’s community including the Advocacy Network. Participation should take approximately 12 minutes. There are no risks or benefits.

Survey link: https://www.surveymonkey.com/r/uoaa-patients

If you have any questions, you can reach out to Jeanine Gleba, UOAA Advocacy Manager at ostomy.org.

Ostomy Myths

October 5 was Ostomy Awareness Day, and there were many articles about Ostomy Myths. One of my favorites was from the blog Blood, Poop & Tears. Originally compiled in 2011, it made the rounds again this year, and I love that it’s not taken too seriously. The author is no longer supporting this website, but the information is as good now as it was then.

Apple Watch Hard Fall feature

Do you own an Apple Watch? I recently bought one because I wanted the Hard Fall feature. This is a feature that Apple has incorporated that sends an emergency signal to 9-1-1 and an emergency contact that you designate, should it detect a fall. But it is only available on the new iWatch Series 5 (the Apple sales guy actually said not to even bother with the Series 4). I ended up buying a Series 3 watch anyway, just because I didn’t want the added expense (and the Series 5 Watch has only been available for a couple of weeks). But already there have been news reports of a bicycle rider falling and the iWatch calling emergency services to help. Something to consider if you have a fear of falling. (Posted simply for information because I am an instructor with the Stepping On program to prevent falls for seniors. This is not an endorsement)

Sept 2019 News

Sept 2019 News

****NEW TIME FOR OCTOBER 3 MEETING****
1:00 AT LONGS PEAK HOSPITAL
CONFERENCE ROOM B

Our Guest speaker for October will be Erin Pallin, Registered Dietitian at Longs Peak Hospital. Erin was especially helpful when I was in the hospital, and I’ve asked her to specifically seek out some information regarding probiotics for ostomates. Hopefully she can find us some answers.

We had some great discussions at our meeting last month, from suggestions for Gloria Vanderbilt “spanx” to CBD and medical marijuana. I’ll be contacting Mike Okeda at Native Roots to speak at an upcoming meeting (hopefully November) to discuss CBD and current trends in the Colorado marijuana industry.

Ostomy Awareness Day 2019

Damon Little

The UOAA has designated Saturday, October 5, Ostomy Awareness Day 2019.
This year’s Ostomy Awareness Day Champion is award-winning recording artist Damon Little. He wants you to know that it will “Be Alright” with the support and information available from UOAA. You can attend, support, and meet with ostomy product manuafacturer reps at one of eight Run for Resilience Ostomy 5k events around the U.S. or gather with family or friends wherever you want for a Virtual walk or run event. When signing up by September 13th you can also get this year’s “Ostomies Are Life-Savers t-shirt”. This is a good opportunity to consider donating in support of UOAA’s nonprofit mission.

Surviving Flu Season

Have you thought about getting your flu shot yet? As the weather gets colder, flu season is once again upon us! We have a long stretch between first sniffles and the warm spring, so what’s the best way to get through flu season with an ostomy? This article and video from Shield Healthcare offers tips and reminders to avoid the flu, suggests ways to boost your immune system, and has recommendations if you do catch the flu (hydration, anyone?). Here’s hoping no one gets the flu this season!

UOAA Research Project

The UOAA is conducting its first-ever research study to examine components of UOAA’s Ostomy and Continent Diversion Patient Bill of Rights to demonstrate best-in-practice standard guidelines for ostomy care. The data collected will help make improvements to the underserved ostomy population. They are seeking voluntary participants to complete a survey and would like to recruit as as many ostomy patients as possible. Participation should take approximately 12 minutes. There are no risks or benefits.
Survey link: https://www.surveymonkey.com/r/uoaa-patients

Home Health Care

If you’ve just had surgery, or will be having surgery soon, you will probably be receiving Home Health Care for a period of time after discharge. Home health care can include a broad range of medical services performed by medical professionals. These include: skilled nursing care, physical therapy, occupational therapy and speech therapy. The UOAA has a self-advocacy tool so that you know what to expect and what to do when receiving medical care in your home. You have a right to quality care and deserve quality care. Know your rights. You deserve to be able to live your life to the fullest with your new or established ostomy. (For a direct link for the PDF of the self-advocacy tool, click here)

Salts

At our meeting I mentioned that I had requested samples from a large Ostomy manufacturer in Europe called Salts Healthcare. They came! A lot of them! Salts is quite popular around the world. They currently ship to Canada, but not yet to the US. As you can see you can order samples, and their rep told me that they will let you order supplies but, of course, they would not be covered by insurance. I’ll bring these with me to our next meeting. (sweet! No, salty, according to Charles! )

July 2019 News

July 2019 News

We had a great time at our mid-year lunch this month! We met at Pinocchios Restaurant in Longmont and it was our annual meeting of Charles Gets to Ask!, an opportunity for our ostomy nurses to ask questions of us (and we need to now change the name because we have Tara and Kelly to support us!). There were some good questions asked of our group, such as:

  • What do we wish we’d been told when we left the hospital?
  • What concerns did we have around social stigma, intimacy and body image?
  • What products do we like or not and why?
  • What suppliers do we like or not and why?
  • What would men use to carry their supplies?

We also had show-and-tell of our favorite products. These included Sensi-Care Adhesive Spray Removal and wipes, barrier rings, unique belly wraps, panties and items from OstomySecrets. There was also a creative solution using clothespins for adding air into closed-end disposable bags. It was a good time sharing stories and experiences, and the food was good, too!

Are You Prepared for an Emergency?

The recent earthquake in California was a good reminder that emergencies can happen at any time. Are you prepared? A good rule of thumb is to have at least three months extra supplies on hand. If you have Medicare, and find you have leftover supplies at the end of your ordering period, hold onto them as extras. Have you tried any samples that you no longer use? Those are also good to have on hand. Hurricane season is upon us, and it’s a good reminder to be ready, just in case. This article from Shield Healthcare has some good tips to help you prepare. There are lots of creative ways to store your supplies, too. Here are some examples I’ve found:

Hack for Coloplast pre-filters

This image shows the Coloplast circle pre-filter that I hate!

I use both Hollister and Coloplast products. I need to use convex wafers and every 3-4 changes I’ll switch so that the pressure points from the convexity changes and helps prevent any pressure sores. I also like to use opaque pouches, but Coloplast only provides opaque pouches with a “pre-filter”. This is a circle filter that fills with liquid and it feels like I’m wearing a pillow. I recently found a great hack to remove this filter and my life has so improved. I’ve never posted anything on YouTube, but I appreciate those that have!

I’m going to the UOAA Conference August 6-10 in Philadelphia. Two issues I’m going to follow up on are (1) the benefits of probiotics with an ostomy, specifically those with ileostomies and (2) try to understand the effects and needs of sodium and dehydration with an ileostomy. Are there any other questions you’d like me to try and get answers to? Email your thoughts and questions to smbogatin@yahoo.com.

ALSO, a followup to our conversation about having Rolf Benirschke speak here in Denver. The Denver Ostomy Group is in discussions with his supporters at BBraun and it seems they can work something out. They may coordinate with the upcoming WOCN conference in 2020. As I get more information I’ll let you know.

Next Meeting – July 11 – Lunch!

Next Meeting – July 11 – Lunch!

Charles Gets to Ask!

Thank you, Britney Parrow, Registered Dietitian at Longmont United Hospital, for joining our group last month. Our July meeting will be our annual summer gathering for lunch. We’ll meet on Thursday, July 11, 12:00 noon, at Pinocchios Restaurant, 1751 N Hover, Longmont. Please RSVP if you’ll be attending to smbogatin@yahoo.com. This lunch is an opportunity for “Charles Gets to Ask!“. We’re constantly asking Charles questions, but now he has the opportunity to ask what it’s like for us ostomates. Bring an item or accessory that you like or don’t like, so we can share opinions and get new ideas.