We had a nice turnout for our Summer lunch outing in July. Charles Sloan, supporting WOCN at Longmont United Hospital, was able to join us, and he’ll be our Speaker for August. He’ll be sharing the presentation “Ostomies 101: Assessment and Nursing Interventions”, that he and WOCN Julie Paul prepared for the staff at LUH. If you missed this presentation last month, try to join us on Thursday, August 2 at 1:00 in the Gauguin Room at Longmont United Hospital.
Our next meeting will be lunch! We’re meeting at the Village Inn in Longmont, CO, 1216 South Hover St. at 12:00 noon. Please RSVP to BoCoOstomyGroup@gmail.com, or leave a message at 720.378.8411. The latest July newsletter is now available on the Newsletter tab. Hope to see you there!
Our meeting for July is…lunch! We’ll meet at the Village Inn in Longmont, 1216 South Hover St, on Thursday, July 5th at noon. Please RSVP to BoCoOstomyGroup@gmail.com.
In the News
Did you get your ostomy due to ulcerative colitis? If so, there’s a new treatment that’s recently been approved by the FDA. Xeljanz (tofacitinib) is now approved for adults with moderate to severe forms of UC. I was aware that Xeljanz was in Phase 3 trials at the end of 2015 (just before my surgery) and I thought it would have been approved by the end of last year. Expect to see ads for Xeljanz and UC on the TV soon!
When I saw this article from the National Institutes of Health I took note to share it with you. Originally published by the British Journal of General Practice in 2012, this insightful article shows how lucky we are to be able to use the supplies we have, and the creativity of ostomates in developing countries. Fashioning appliances from jar lids and plastic bags, the resourcefulness and resilience of these patients is inspiring. Click on the title above to see the article.
More and more I’m reading about problems with hernias after getting an ostomy. There are many articles about this, but one I like is from the British Hernia Centre. This straight-forward article describes how hernias are formed, their impact on patients, and suggestions for healthcare professionals. I’m trying to arrange for a physical therapist to come and speak to our group before the end of the year to address this issue. Do you have any questions about hernias? (For example, is the risk of hernia higher when it’s new, or does your risk go down over time?). I’m happy to pass your questions along for our speaker so she can address them.
The UOAA (at ostomy.org) recently published an article on the challenges for caregivers when an ostomate develops dementia. As the article points out, “According to the Population Reference Bureau, the number of Americans 65 and older will gradually increase from 15% of our population to 24% by 2050”. Here is the link from that article from the DementiaUK website, “Caring for a person with a stoma and dementia“.
It’s Summer…it’s Hot!
Summer comes with a lot of challenges for those of us that like to spend time outdoors. From sweating, dehydration and swimming, well, anything might go wrong! Here’s an article by Eric Polsinelli at VeganOstomy that offers suggestions for helping with summertime problems. I also wrote a blog post about my summer heat and adhesive rashes that you can read here. You can also find other suggestions by doing a quick search on Inspire.com.
It’s still over a year away, but the UOAA is starting to promote the next National Conference to take place in Philadelphia, August 6-10, 2019. Registrations will begin in January!
A big THANKS to Charles Sloan for speaking at our May meeting. Charles and the WOCN team at Longmont United have been valuable resources for so many patients. We certainly appreciate their efforts and Charles’ presentation, where he described the role of the WOCN and their responsibilities. The support we receive from nurses like Charles is critical for our success!
Youth Rally hosts kids with bowel and bladder conditions for a 5-night camp and campus experience. Focused on kids 11-17, Youth Rally this year will take place at the CU Boulder campus, July 16-21. Many of these campers have ostomies, and this week is used to promote independence, self-esteem, learning, friendship and, of course, FUN! Applications for volunteers are available until June 1.
Last October, we had a terrible scare when a close friend was caught in the firestorm that enveloped Santa Rosa, CA. He was awakened by his dog, Sparky, (yes, that’s his dog’s name!), and when he went out the front door was met by a red sky and neighbors yelling that they had to get out NOW. He had time to throw Sparky in the car….and that was all. He soon lost everything and today is still living in temporary housing. Are you prepared? Last year Laura Cox, Shield Healthcare’s Ostomy Lifestyle Specialist, advocated having enough supplies for 3 months. I followed her advice and now have a larger cabinet to hold them all! This excellent article, Disaster Preparedness: Surviving a Firestorm with an Ostomy, posted on the UOAA website, was prepared by an advocacy nurse that also fled the night of the fires. In addition to her harrowing story, she offers advice and suggestions, before, during and after a disaster. Good advice for us all.
Speaking of Charles…..
Charles Sloan and Julie Paul will be teaching a class, “Ostomies 101: Assessment and Nursing Interventions”, for the nursing staff at LUH on June 19, 4-7 pm in the Gauguin Room. This is a comprehensive talk that will include topics such as, ostomy assessment and care, ostomy pouching systems, complications and nursing interventions, and peristomal skin care. Charles has extended an invitation for our support group to attend this talk, which should have a lot of interesting and topical information for all of us.
I have family in Sweden, and visited with them before my ostomy surgery in 2016. I was pleasantly surprised at the amount of information they had to share with me and the openness they had in wanting to talk about the surgery and how it would impact my life. They were much more prepared than I was! The Swedish health system has promoted efforts to normalize ostomy surgeries and remove stigmas and misconceptions.
Ananda Badet has shared with us the documentary “No More Secrets“. Sadly, not all countries are as progressive as Sweden, and filmmaker Anisha Vijayan is trying to open eyes in India. According to Anisha, India has an estimated 300,000 ostomates, with very little awareness within the country. She has produced this small film to start a conversation and break the stigma of ostomies in India. It’s a simple film with a powerful message for those that may feel embarrassed or ashamed.
Our guest this month is Gloria Martinez, Chronic Care Specialist at B.Braun Medical. B.Braun has been a major medical supplier in Europe and other parts of the world, and is now expanding it’s wound and ostomy products here in the U.S. Eric Polsinelli, at VeganOstomy.ca recently reviewed their latest pouching system and gave it a “recommended” rating. Gloria will be bringing samples for us to examine, including ones for continent diversion. B.Braun has an extensive medical supply history that includes not only wound/ostomy products, but nutrition (TPN) therapies, local anesthesia, and infusion therapies. B.Braun ostomy information can be found at myosto-mylife.com. Thank you, Gloria!
It’s UOAA National Election Time! This year there are openings for 2nd Vice President, Secretary, and three Director positions. Most are unopposed, except for the 2nd Vice President position. Voting concludes at the end of June, and as results are known I will post them in a future newsletter.
The WORST an ostomate can expect is a blockage. Do you know what to do? Do your family or friends know how they might help? Often, even if you end up in the emergency room, the doctors there won’t have seen an ostomy blockage before, and won’t know for sure what to do. The UOAA has developed a handy card that you can print and carry with you for caregivers and doctors. I keep a copy on my computer home screen that can be printed out by a family member, if needed. It includes what symptoms to look for, home techniques for moving things along, and a guide for clinicians if you need to go to hospital.
Mental Health with an Ostomy
Getting an ostomy is a traumatic event, whether you’ve done your homework and expect it, or whether it happens overnight after going to the ER with what you hope is a simple tummy ache. In this video, Shield HealthCare’s Ostomy Lifestyle Specialist, Laura Cox, discusses the mental health challenges she faced before and after surgery, and how she’s learning to cope and handle the stress that comes with being an ostomate.
CORRECTION: We have learned that Jon Egan of ConvaTec will not be able to present at our May 3rd meeting (he has left the company). Instead, our own Charles Sloan, WOCN extraordinaire, has agreed to step in and answer all of our questions. He will present a slide show of what a wound ostomy nurse does in a day, and the services that they provide. Come prepared for an informative session and a unique opportunity to ask questions.
For April, we will have a presentation from Stealth Belt V.P Collin Jarvis. At 21 Collin was a nationally ranked middle and long distance runner when he was diagnosed with Ulcerative Colitis in 2013. Stealth Belts fit snugly against the body in order to provide support, comfort, and protection for ostomy and urostomy appliances. They have belts for all kinds of activities, from sleeping to water sports. And they are a NASCAR sponsor with driver and ostomate Ray Ciccarelli!
Colorectal cancer is the third most common cancer diagnosis among men and women combined in the United States. There is currently no cure, but it’s 90 percent treatable if caught early with a screening. American Cancer Society estimates there will be over 140,000 new cases and over 50,000 deaths this year.
March is typically Colorectal Cancer Awareness Month, but recognition can take place at any time.
UOAA is proud to be a member organization of the National Colorectal Cancer Roundtable (NCCRT). The NCCRT is a collaborative partnership with more than 100 member organizations across the nation, committed to taking action in the screening, prevention, and early detection of colorectal cancer. taking action in the screening, prevention, and early detection of colorectal cancer.
For April, we will have a presentation from Stealth Belt V.P Collin Jarvis. At 21 Collin was a nationally ranked middle and long distance runner when he was diagnosed with Ulcerative Colitis in 2013, Stealth Belts fit snugly against the body in order to provide support, comfort, and protection for ostomy and urostomy appliances. They have belts for all kinds of activities, from sleeping to water sports. And they are a NASCAR sponsor with driver and ostomate Ray Ciccarelli!
Our speaker this month will be Roger Pomainville. Roger is a long-time resident of Longmont and an avid climber. After his diagnosis of UC in 1977, and ileostomy in 1980, he was told he could do anything in life. And he’s made that happen! Roger has climbed our own Longs Peak more than once, climbed to Base Camp at Mt Everest, and represented the Denver Metro Ostomy Group and our local CCFA on a climb to Mt Elbrus in Russia (elev 18,510 ft). He has a compelling presentation and, if time permits, can show how to change your ostomy pouch while roped to the side of a mountain! As always, time will be available to ask questions and share concerns. Hope you can make it!