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.

June 2019 News

June 2019 News

Have you registered for the UOAA National Conference? This year’s conference looks interesting, with additional tracks for Pediatric, Young Adults and Caregivers. The full schedule is now posted online. I’ve always enjoyed sessions with WOCNs and the Barrier Cooking Show, where you actually get to make a barrier! This year it’s in Philadelphia, August 6-10. Registration is at the UOAA website. For discounts at the Philadelphia 201 Hotel, use discount code UO1369.


Enteritis and the Ileostomate
Our Phoenix Magazine article has been published! The Phoenix does not publish online, so I’ve posted the article on our website. You can now see the article on the title bar at the top of our website. Charles and I are happy it turned out so well and we’re already talking about future articles we can submit. Thanks for all the support and feedback! I’ve requested extra copies of this Phoenix to have available at our next meeting.

Our own Roger Pomainville at Mt Ranier. We can do anything!

Back to Work
Have you wondered how difficult it might be to return to work after ostomy surgery? New ostomates find this thought scary, but those that have had their ostomies for awhile know that with a little preparation, there’s nothing to worry about:
–Be Prepared
–Know Your Rights
–Don’t Stress Out
–Hydrate!
Find these and other tips at Back to Work with an Ostomy on the UOAA website.

I took this picture from Ft Lauderdale beach last week!

…And What About Swimming?
Yep, it’s summer. Don’t let the water scare you! Barriers are designed to get wet and there is a lot of cute swimwear now to help disguise your pouch. Lots of ostomates join water aerobic classes, swim competitively and even scuba dive. Did you know that The Americans with Disabilities Act ensures your right to pool access? I found an Advocacy article that addresses your rights and advice on swimming confidently. So jump in the water this summer!

SenSura Mio Flip

Do you, or someone you know, have a parastomal hernia? Coloplast has a new product, the SenSura Mio Convex Flip. This barrier has a unique design specially made to fit bulges, curves and hernias. Support groups have received a box of samples of the new Flip and I’ll be bringing them to show at our next meeting.

Speaking of new products….have you been afraid to try new products? I usually use Hollister, but have found over the years that with summer heat the adhesive tape causes irritation. So I switch to a Colopast barrier about 50% of the time, using Hibiclens, powder and a barrier wipe on the irritation. Keeps the itching at bay. I recently ordered a box of Marlen supplies. I’ve used them in the past as samples, but thought I’d give them another go. I’ll let you know what I think!

Our July meeting will be our summer annual lunch at Pinocchios, 1751 N Hover, Longmont, July 11 at 12:00 noon. Because our normal meeting would be on July 4, we’ve moved it one week later. I’ll send reminders, but please RSVP so we’ll know how many to expect.

Next Meeting – June 6, 1 pm LUH

Next Meeting – June 6, 1 pm LUH

Our meeting on June 6 at LUH will feature Britney Parrow, Registered Dietitian at LUH. Britney will answer questions regarding general nutrition needs for ostomates and address issues around dehydration. We’ve asked her to investigate the need for electrolytes and the effects, and benefits, of sodium when you don’t have a colon. Hope you can join us for this conversation!

May 2019 News

May 2019 News

A reminder that our next meeting will take place on May 2 at 5:00 pm, Longs Peak Hospital. Sadly, Roger can not make this meeting after all. We can continue our conversation from last month regarding the effect of Enterits and I’ll bring suggestions and Travel Cards from the UOAA so we can talk about travel with an ostomy. A timely conversation with summer here!

The article “Enteritis and the Ileostomate” is at the printer and should be sent out soon! After it’s posted online through The Phoenix Magazine I will be able to have the link on this website. We submitted a couple of pictures and some of the slides from Charles’ presentation, so it will be interesting to see what the editor found useful. I’ll have extra printed copies in May, and I’m happy to forward a copy to those unable to make it to a meeting (just let me know). Also, I believe that we’ll be able to announce the article to other support groups around the country. This is such an important topic and I’m happy that we’re able to share this and get the word out.

The UOAA has been promoting their advocacy efforts, and I found this article to be really interesting. In April of 2018, the insurer NY Medicaid decreased the allowable quantity for certain ostomy barriers from ten to eight per month. Because the suppliers wouldn’t open boxes for partial shipments, it meant that patients could get a box of five in one order, then a box of 10 the next time. But that still wasn’t enough for many patients to cover them for an entire month. Advocates at the Albany Medical Center in New York met with Medicaid officials to explain details and were able to have quantities increased back to the 10 units/month. I’ve been hearing of legislation to have a single-source supplier for Medicare, where Medicare would only approve products from one supplier (not all of them). I believe this legislation has been put on hold for a couple of years, and I’m sure the advocacy group at the UOAA is following carefully.

Charles is in good company with his nomination as WOCN of the Year. The UOAA recently profiled all of the nurses that have been nominated. Last week was WOC Nurse Week, and it’s with gratitude that we celebrate all of these incredible nurses for what they do to support us! THANK YOU, CHARLES AND TARA!

All Support groups have received some promotional materials and samples from several suppliers, including Shield Healthcare, Byram, and Safe n Simple. I’ll have these available at our next couple of meetings. Also, our mid-year lunch is scheduled for July 11th. It’s never too early to mark your calendar!

Just because we’re broken doesn’t mean we can’t bloom

I visited Washington DC a couple of weeks ago and found this amazing tree. I think it speaks volumes for all of us — we may have been broken, but we can still bloom.

Next Meeting-May 2, 5:00 pm Longs Peak

Next Meeting-May 2, 5:00 pm Longs Peak

Our next meeting will be on Thursday, May 2nd at 5:00 pm at Longs Peak Hospital. Our speaker will be Roger Pomainville. Roger would like to continue our discussion from April regarding our “Enteritis and the Ileostomate” article, and we’ll hear from him about traveling with an ostomy. Roger has had lots of experience traveling, including his visit to Base Camp on Mt Everest with his ostomy! Roger’s stories are inspiring, so I hope you can join us.

April 2019 News

April 2019 News

Charles and I have good news to share — the article that we’ve written about my hospital experience in January has been accepted and will be published in the summer edition of The Phoenix Magazine! Titled “Enteritis and the Ileostomate”, it describes my symptoms and complications while I was in the hospital, and Charles explains the medical issues that were going on during that time. Enteritis is a state of severe dehydration that can be due to a number of causes, and in my case was caused by a simple stomach virus. At our April meeting we’ll discuss what happened, what to look for, and how to advocate for yourself when doctors have no idea how to treat patients with ostomies. We’ll have copies of the article available, and will also have a taste testing of a variety of ORS solutions. We feel this is an important topic that hasn’t received a lot of attention, and we’re pleased it will now get noticed within the ostomy community. Our meeting will be at LUH, April 4, 1:00 pm at the Gauguin Room.

More good news! Charles has been nominated as WOCN of the Year for the UOAA National Conference, August 6-10 in Philadelphia. This is certainly an honor he’s worked hard for. Consideration is being given for his education within the nursing community at LUH, and also his outreach in training high-school CNA students about ostomies. A decision will be made in early May. Fingers crossed! (Of course, he’s ALWAYS our WOCN of the Year!)

And speaking of the UOAA National Conference, discount rates are still available at the conference hotel, the Philadelphia 201 Hotel. The conference price, for the week and all sessions, is $150. There are new sessions planned for this year, as well as several social functions. This is a fun, educational event for all ostomates and caregivers.

Next Meeting-April 4, 1:00 pm-LUH

Next Meeting-April 4, 1:00 pm-LUH

Our next meeting will be a discussion regarding the condition of Enteritis. This is an inflammatory response of serious dehydration, and it put me in the hospital in January. We’ll share my story, have an explanation of this condition by Charles, discuss various ORS (oral rehydration solutions) and have taste tests of different ORS, and talk about self-advocacy when doctors and ERs have no clue how to treat patients they’ve never seen before. This should be an important and interesting session and we’d like to encourage everyone to attend to learn about this.

Thank you to Julie Adams for introducing us to the Aspen Club of UC Health at our last meeting. Longs Peak is printing more applications for the Aspen Club and I’ll try to bring some to our meeting in April. The Aspen Club is coordinating with the Age Well program at LUH for social and wellness activities for all seniors.