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:

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Hack for Coloplast pre-filters

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.

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.

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.

…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!

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.

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: https://www.uchealth.org/services/community-health/aspen-club//

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.

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, sarafinanana7@gmail.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!

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.

 

 

 

 

 

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:

DIAPHRAMATIC BREATHING

• 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
• Repeat: 2 times; Hold: 1 second; Complete: 1 Set; Perform: 2 times/day

 

ISOMETRIC TRANSVERSE ABDOMINAL CONTRACTION (BELLY-TO-SPINE)

• Lay on your back with your knees bent
• Place your fingers on your stomach just inside your hip bones to feel the muscle contract
• Activate your abdominals by pulling in gently with 20-30% effort. “Try to bring your navel to your spine”
• Hold this contraction for as long as possible to improve endurance
• Learn to use this muscle with daily activities such as lifting, bending, and rolling
• Repeat: 5 times; Hold: 10 seconds; Complete: 1 set; Perform: 2 times/day

SUPINE PELVIC FLOOR MUSCLE KEGEL (KEGELS)

• 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
• Repeat: 10 times; Hold: 10 seconds; Complete: 1 set; Perform: 2 times/day

 

Looks like Fall is around the corner here in Colorado.  Leaves are falling and there’s already snow in the high country in Wyoming. I love Fall, but I hear the Farmer’s Almanac is predicting a snowy winter for us.  Well, this IS Colorado!

Speaking Out Changes Lives

World Ostomy Day is sponsored by the International Ostomy Association (IOA)  and celebrated every three years.  This year’s celebration takes place on October 6 with the theme “Speaking Out Changes Lives“. The aim of World Ostomy Day is to improve the rehabilitation of ostomates worldwide by bringing to the attention of the general public and the global community the needs and aspirations of ostomates. Awareness this year is highlighted by Run For Resilience 5K races in various places around the country and virtually. One way to participate is by providing a Letter to the Editor of your local paper.  The UOAA has provided a template for this, and I’ve found it to be effective in the past.

Know Your Pouching System

Jeanine Gleba, UOAA Advocacy Manager, notes in a recent article that the most critical component for living well with an ostomy is finding the right type of ostomy supplies. In a 2017 study called Peoples’ Experiences With Pouches (P.E.W.P.) a majority of ostomates felt they did not receive all of the information that they wanted or needed while in the hospital after ostomy surgery, with lacking product information as the second highest category for inadequacy. In particular “about one quarter of the patients were NOT told that there were other products on the market available to them that may work better for their type of stoma or situation”. I agree! About once a year I review what I’ve been using and then contact all the Manufacturers for free samples. Not only are they great to keep as extra supplies, it’s always good to know if an alternative pouching system will work for you.

Insurance Webinar

I’ve recently run across a webiner sponsored by Hollister Secure Start Services for Ostomy Insurance Reimbursement. Topics covered include Medicare, Medicaid, other Insurances, and Managed Care. Coverage limits are also discussed and broken down by type of ostomy and product.  I found this webinar to be really interesting, and particularly useful for new ostomates trying the navigate insurance requirements.

The forgotten challenge of living with an ostomy: costly medical supplies

Continuing the theme of pouching and supplies this month, I ran across an article in OstomyConnection profiling a man in Tanzania that faced a permanent colostomy. He was looking forward to the surgery, until he realized the expense of his supplies.  His story was recently documented in The Citizen Tanzania and highlights that people all over the world are faced with this decision. OstomyConnection has created Kindred Box, a pay-it-forward initiative connecting people who have excess ostomy supplies to donate to those who need them. Additionaly, organizations like Friends of Ostomates-USA, FOW-Canada, and Ostomy211 are useful agencies accepting donated supplies for those that need them.

Canadian Tobacco Warning Labels in the News

Have you heard about or seen the latest kerfuffle surrounding the recent Canadian tobacco warning labels?  One of them used an image of an ostomy pouch as a deterrent against smoking. Many found the image to be offensive, and a public campaign was able to get that particular label removed from the campaign.  I personally found the image quite offensive, and some have noted that perhaps it wouldn’t have been so insulting had it not shown a full ostomy pouch.  VeganOstomy has an interesting article profiling this discussion in a recent blog post.