Offering Encouragement and Support for all Ostomates

Author: Susan Bogatin Page 3 of 9

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

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!

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 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

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
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

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

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

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

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

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.

March 2019 News

Our meeting in March will be a presentation about the Aspen Club by Julie Adams, Manager of Volunteer Services at Longs Peak Hospital. The Aspen Club, through UCHealth, is a community resource for those over 50 with over 12,000 members. It was established in 1989 to provide a wide range of program benefits including health education, screenings, hospital discounts and social opportunities throughout northern Colorado. To learn more about what Aspen Club has to offer and to fill out an application please visit:

Have you had any problems with the quality of your supplies? I recently received a box of Hollister pouches that was defective. They had some very small slits in the front covers that weren’t really noticeable…well, until they were! I called Hollister and they were great about replacing the box. They simply asked for the Lot number so they could keep track of any other complaints. Turns out I read about this problem during the same time frame from an online group I follow. If you notice any defects, the suppliers want to know and will replace any necessary supplies.

Do you know where to donate supplies? Or where to get supplies if your insurance doesn’t cover all your costs? Locally, GoodHealthWill… has two facilities in Loveland and Greeley. Many people donate supplies there but they may not always have specifically what you’re looking for. Supplies are available at great discounts. There are two other resources that I use for donations: Friends of Ostomates Worldwide and OstoGroup. Friends of Ostomates Worldwide (FOW) have donated supplies to over 95 countries around the world. All of their supplies are donated without cost to recipients and make a huge difference to those in developing countries where supplies are unavailable. OstoGroup, located in Florida, has no-cost supplies for those without insurance (just shipping and handling) and low-cost supplies if you’re needing extra. You can even see their inventory and order from their website. These groups will welcome extra supplies that you’re no longer using or needing, and you can take the deduction off your taxes.

There is a new resource available for ostomates, the National Ostomy Foundation. Located in California, their mission is focused on ostomy research both before and after surgery. They are in the process of building their community resources and hope to host a variety of events across the nation. They also plan to have a national conference on the alternate years from the UOAA so ostomates have an increased opportunity for connection.

Speaking of conferences, the UOAA National Conference is August 6-10 in Philadelphia. The conference schedule is now available and hotel room discounts are good until July 5 (assuming rooms still available). These conferences are a great way to connect with other ostomates and learn a lot.

Next Meeting-March 7, 5:00 pm Longs Peak Hospital

Thank You to Diana Leutenegger of ConvaTec, our speaker in February. Diana shared that ConvaTec has recently expanded their me+ program to include “Your Guide to Recovery”, a detailed program for regaining activity after surgery.

Our meeting in March will have guest Julie Adams, Manager of Volunteer Services and the Aspen Club at Longs Peak Hospital. The Aspen Club is a community resource for those over 50. The club in Ft Collins is particularly active, and offers program benefits including health education, screenings, hospital discounts and social opportunities. Julie will talk about the efforts to build the Aspen Club in our area and the benefits we can all expect. As always, time will be available for questions and conversation with Tara or Charles, and we’ll discuss a preview of our meeting in April.

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