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.
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.
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.
Our guest for February will be Diana Leutenegger of ConvaTec. ConvaTec has recently expanded their me+ program to include “Your Guide to Recovery”, a detailed program for regaining activity after surgery. Our next meeting takes place at Longmont United Hospital, February 7, 1:00 pm. I will be out of town, but Debra Noel, email@example.com, will happily attend and facilitate. And don’t forget to check out her blog, Drop In With Debbie!
Our March meeting at Long Peak Hospital will have a presentation on the Aspen Club of UCHealth. Established in 1989, and now with more than 12,000 members, the Aspen Club is a community resource for those over 50. It provides a wide range of program benefits including health education, screenings, discounts and social activities. They serve all of Northern Colorado, and will be expanding to Longmont in the next couple of months. Check out the many activities for January/February here.
I wanted to share this graphic I found on the OstomyConnection Facebook page. I was unable to find credit for it, but I thought it interesting that fully 50% of all ostomy surgeries are due to cancer and diverticulitis.
Registration is now open for the UOAA National Conference 2019 in Philadelphia, PA, August 6-10. There are three additional tracks this year for Pediatrics, Young Adults and Caregivers. There are four full days of Conference Sessions covering a wide variety of topics, including panel discussions, medical marijuana, ostomy-specific breakout sessions (ie ileostomy, colostomy, etc) and social events. Hotel discounts are available until May 31.
A couple of weeks ago I found myself in the hospital for a total of three days. I contracted a very common stomach-bug virus for children, but it’s very rare for adults. I was severely dehydrated and, Thanks to Charles! he knew of a protocol for how to slow and thicken my output that slowly allowed me to rehydrate and return my output to normal. This was a relatively small event, but felt very large to me, and was made more urgent after I realized that the doctors treating me had no idea what to do. They were still treating me as if I had a colon, and were actually making things worse (as far as I was concerned). Charles and I are corroborating on a paper for the Phoenix Magazine to talk about this type of incident and how to prepare for it, should it happen to you. Our meeting at LUH in April will be to discuss what happened to me and share what we’ve learned. Let’s just say, I’m so glad Charles is on our team!
We’re expanding! Our first meeting at Longs Peak Hospital will be January 3, at 5:00 pm, Conference Room A, 1750 E Ken Pratt Blvd., Longmont, CO 80504. At the request of Longs Peak, our guest will be Melissa Hood of Coloplast. If you missed seeing her at Longmont United earlier this year, now is a good opportunity to come and see samples. The wound/ostomy nurse at Longs Peak will also be in attendance for questions and conversation.
I recently vacationed with the Ostomy United/Survivors group out of Los Angeles. It was so much fun! There were 34 that attended (20 of us had ostomies) and it was great to see the support from family and friends. The ages were between 10 years old and 80! We cruised the Mexican Riviera, and visited Cabo San Lucas, Mazatlan and Puerto Vallarta. Everyone received a travel bag filled with various samples, a tee shirt and schedule of events. There were three days of seminars that were very well attended.
Joe Vega and David Martinez manage the San Gabriel Ostomy Association and the USC Community Ostomy Support Group in Southern California, and they did an amazing job organizing this event. There was a WOCN in attendance for anyone that needed help, and he was available one-on-one for questions. There were presentations on Tips and Tricks (there was a great hack using a sanitary napkin (!) for preventing sweat under your pouch), nutrition with an ostomy, the Power of Positive Thinking, and an evening event for star gazing and learning about the Hubble Telescope. There was also a day excursion to a tequila factory with lots of tasting and visiting around Puerto Vallarta.
The best part of the trip was meeting so many great people and the freedom to talk about, well, everything. Some people had multiple ostomies and it was interesting to see how they cope (one woman had three, a colostomy, urostomy and a nephrostomy on a kidney). There were breakout sessions so that ostomy patients could meet, and a separate session just for spouses and caregivers. I don’t often think about whether to tell someone about my ostomy, but being in such an open and safe environment felt very freeing.
Joe and David are planning another cruise for ostomates and caregivers in May, 2019, this time to the Caribbean. They will have ads in the next Phoenix Magazine, and I’m happy to share any information, if you’re interested. Hope everyone has a wonderful Holiday Season and very Happy New Year!
NEW MEETING TIME AND LOCATION! Starting January 3, new meetings will begin at 5:00 pm at Longs Peak Hospital, Conference Room A, 1750 E Ken Pratt Blvd., Longmont, CO 80504. Our guest for January will be Melissa Hood, from Coloplast. If you missed this information earlier this year, this time could be perfect for those wanting evening meetings!
Don’t forget our December meeting will be lunch at Pinocchios Restaurant at 1751 Hover Street in Longmont at 12:00 noon. Please RSVP to Debra Noel, firstname.lastname@example.org, 717-793-0910.
A big THANK YOU to Karlene Martin from Shield Healthcare, our presenter in November. In addition to ordering supplies, we learned that Shield offers educational materials and support for new and established ostomates.
Know Your Healthcare Insurance and What You Need. This recent advocacy article from the UOAA covers in-depth issues during this season of open enrollments. Topics range from insurance basics and plan types, covered benefits for ostomy supplies, and your medical needs. To help you chose carefully, is an added checklist, 10 Questions To Ask Before You Choose a Health Plan. It’s important for all ostomates to be advocates for their own healthcare, and understanding our healthcare insurance needs is a big part of that.
It’s the end of the year….a good time to clean out supply closets! Many items can be donated. I’ve recently donated extra wafers and some accessories to GoodHealthWill. a local, non-profit medical supply shop. I’ve also sent donated supplies to Friends of Ostomates Worldwide. Two other groups promoted through the UOAA are OstoGroup and Ostomy 2-1-1. Both OstoGroup and Ostomy 2-1-1 also allow you check online for any supplies available that you may need.
A skin care tip from our last meeting was from WOCN nurse, Charles Sloan. For fungal and general skin irritation a good solution may be washing with Hibiclens. I have irritation every summer due to heat and sweat under my wafer, and a cleansing with Hibiclens cleared my skin quickly. If you try this, make sure to rinse it off thoroughly. Of course, should you have persistant irritation, contact your doctor or checkin with a wound/ostomy nurse to have it evaluated.
Did you know our own Debra Noel has a monthly blog? Drop In With Debbie is promoted through Longmont Senior Services, and gives Debbie the opportunity to share her insights and thoughts on life and what we can all achieve. Her columns are inspirational and can help others understand how to reach their own aspirations. We’re so happy she’s a part of our group. Thank you, Debbie!
NEW MEETING NEWS! Starting in January, we’ll be alternating monthly day and evening meetings with Longs Peak Hospital. It’s exciting to see our group grow, and expanding to an evening meeting will allow ostomates another opportunity for support. Day meetings will continue at Longmont United Hospital at 1:00 pm, and evening meetings at Longs Peak Hospital will be at 5:00 pm. Currently, the monthly schedules will be:
***Longmont United Hospital — February, April, June, September, November
***Longs Peak Hospital — January, March, May, August, October
This schedule still assumes social lunches in July and December.
Our mission is to provide encouragement and support to all Boulder County ostomates. We look forward to new growth in 2019!
The Holidays are almost here….Hope you have lots of joy coming your way!
I’ve recently been reading a lot about ostomy reversals, and there’s an article this month from the UOAA, “Facts About Ostomy Reversals“. This article focuses on reversals after colorectal cancer, but the information applies to all potential reversals. Most patients with temporary ostomies will have the ostomy for about 3-6 months, and the hospital stay is expected to be only 3-4 days. Generally much less involved than the original ostomy surgery.
In an earlier post I noted the advertising campaign by lingerie brand Aerie this past summer. This campaign focused on women with disabilities, and one of them was Gaylyn Henderson, who modelled for the brand with a stoma bag. Gaylyn has a passion to provide support, education and awareness for those with chronic illnesses, and has founded the non-profit Gutless and Glamourous to support those efforts. In this interview, Gaylyn discusses her decision to pose for Aerie and the positive awareness that she hopes to achieve. As quoted in the Metro (U.K.) article, “Do not let somebody else’s view of what beautiful is dictate how you view or feel about yourself.” Great advice!
Do you know if you’re getting enough Vitamin B12? I’ve recently been more tired than I want, and Vitamin B12 may be the culprit. There are many articles out there about B12 deficiencies, but I found one at VeganOstomy.ca specifically for ostomates. B12 can be taken in many forms, not just foods, including sublingual and injections. I have several Crohn’s friends that have routine B12 injections and swear they help a lot. If you’re feeling tired or having more weakness than normal, talk to your doctor and request an MMA test (Methylmalonic Acid). It’s the most reliable test for ostomates.
The holidays are almost upon us and, if you’re like me, you’re already getting stressed thinking about presents to buy and/or ship, best ways to travel, how many guests will be visiting, what food to take….the list is quite long! As ostomates, we are really strong people. We’ve survived and can keep going. We can carry our supplies with us and, when needed, change a wafer in no-time flat. And we’re looking forward to some of the chaos with family and friends. Or maybe even NO family and friends (we’ve actually hidden out for a couple of holidays). It’s important to not forget YOU. Take care of YOU, in whatever good way that may be. Plan ahead for something to look forward to…..a movie, or starting a new book. That’s how we can stay strong. Remember to breathe…..and just take a moment.
Our November guest is Karlene Martin of Shield Healthcare. Shield is a leading supplier for ostomy supplies, so bring your questions about ordering and shipping. We meet at Longmont United Hospital, 1950 Mountain View Ave., Longmont, CO 80501, at 1:00 pm in the Gauguin Room.
The first 15 minutes of our meeting will be a presentation by Charles Sloan. Charles is continuing to expand his education for ostomy care for nurses at LUH, and will share his latest updates. Also, there will be time for “Talkin’ with a WOCN”, your opportunity for one-on-one questions with Charles for topics of interest to you!
Jenn Davia, our September guest and Physical Therapist specializing in pelvic PT, gave a wonderful presentation on scar tissue management, ostomy anatomy, and hernias. To avoid hernias, basic core strengthening is important. She noted that three, simple exercises are the most important:
While lying down on your back, place one hand on your breast bone and one hand on the abdomen near your navel
Slowly take a deep breath in and focus on trying to get your hand on your stomach rise while the hand on your breast bone remains still
As you breathe in, the hand on your stomach should rise. When you breathe out, the hand on your stomach should lower
Lie on your back with your knees bent and feet flat on the mat or bed
Contract your pelvic floor muscles by tightening in the vagina
Hold this contraction for the prescribed length of time while continuing your normal breathing pattern
Be sure to perform a full relax in between each contraction. Do not hold your breath
If you find yourself holding your breath, inhale first then exhale while tightening the pelvic floor muscles and abdominals. Continue holding these muscles while you inhale again. When you relax, you should feel both muscles relax