Ostomy Canada Magazine – Winter 2023

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STORIES •SUPPORT • INSPIRATION Winter 2023 | Volume 31, Number 2

15 | Get the Support You Need on Your Ostomy Journey 16 | A Great Man – Jean-Pierre Lapointe 18 | Ways to Identify and Control Anxiety 20 | Partners to Support You on Your Bladder Cancer Journey 22 | Blindsided: My Ostomy Story 26 | Coloplast - Diamond SUFO Sponsor 28 | Condolences from FOWC 29 | The Kenya Ostomy Association (KOA) 30 | Ostomy Supplies Replace WD40 for Fishing!

32 | Dancing Through Change 35 | Step Up for Ostomy 2023 38 | AQPS Annual Conference 39 | Our Members Win Awards 42 | From “With Little Means”, a Short Film was Born, “Stuck” 44 | Don’t let Your Ostomy Get in the Way of Living 48 | Have Pouch - Will Travel 52 | Ostomy Canada Youth Camp 2023 56 | Living With an Ostomy has Given me my Life Back 58 | Journey to the Finish Line 60 | My Ostomy Balloon Helped a Student Reach the Moon 62 | Home Health Ostomy Nurses

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22

29

39

DEPARMENTS 5 | Editor’s Note 6 | Executive Director’s Message 8 | Chair’s Message 10 | NSWOCC President’s Message 11 | UOAA President’s message 14 | Ask an NSWOC

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COVER PHOTO: MOVITA BEAUCOUP DANCE PHOTOGRAPHY

Enhancing the Ostomy Canada Magazine experience by transitioning from print to digital Instant Access / Enhanced Interactivity / Eco-Friendly / Cost Savings

Content within the pages of Ostomy Canada magazine is for general purposes and sharing personal journeys surrounding living with an ostomy. Opinions expressed by the editor, health care professionals and authors are their own and not necessarily those of Ostomy Canada Society. Information is not intended to diagnose or treat medical issues. Always consult a health care professional before making any health or lifestyle changes.

Ostomy Canada Society, the editor, the Medical Lifestyle Advisory Team, and authors in general are not liable for any consequences of advice given. Ostomy Canada Society is not responsible nor liable for any problems which may arise from any advertised products, or for any claims made by advertisers.

Submissions may be edited in accordance with standard editorial practice. The editor reserves the right to decline any article. Ostomy Canada welcomes submissions of personal nature, medical questions, humour, travel, lifestyle experiences and advertisements providing the article is relative to people living with an ostomy.

No part of this publication may be reproduced without prior permission from the editor. Published articles become the property of Ostomy Canada Society. By submitting an article, you have consented to its publication in both physical and online forms unless otherwise requested.

WINTER 2023 OSTOMY CANADA 3

Welcome to our newest team member Office Manager / Accountant: WILMA KOHLER I’m happy to introduce myself as the newest member of the Ostomy Canada Society team. My name is Wilma Kohler, I live in Toronto, ON and I bring with me over 15 years of experience in Office Management and Accounting.

I am deeply passionate about providing consistent leadership and administrative support to organizations. I take pride in my ability to adapt to new procedures and technology, always eager to share my knowledge with the team and open for suggestions which can make processes smoother.

In addition to my professional expertise, you’ll find that I embrace life with a profound love for its limitless possibilities,

OFFICERS Chair: Jacqueline (Jackie) Bloom (Salisbury, NB) Vice-Chair: Janet Paquet (Hamilton, ON) Past Chair: Ann Durkee-MacIsaac (Hebron, NS) Secretary/Treasurer: Stephen Maybee (Mississauga, ON) Executive Director: Dana Ypma, (Burton, BC) non-voting OFFICE STAFF Office Manager / Accountant: Wilma Kohler (Toronto, ON) Office Coordinator: Carole Pew (Oshawa, ON) Office Coordinator: Monica Desouza (Oakville, ON) DIRECTORS Jacqueline (Jackie) Bloom (Salisbury, NB) Deb Carpentier (Regina, SK) Troy Curtis (Ottawa, ON) Stephanie Grace (Newmarket, ON) Randy Hull (Winnipeg, MB) Jayne Kerr (Thornbury, ON) Réal Lamarche (Quebec City, QC) Andrew Joseph (AJ) Leveille (Langley, BC) Ian MacNeil (Ottawa, ON) Andrea Manson RN, BSN, NSWOC, NCA (Parksville, BC) Stephen Maybee (Mississauga, ON) Janet Paquet (Hamilton, ON) Joan Peddle RN BN NSWOC WOCC (C) CCHN (C) (Moncton, NB) REGIONAL ADMINISTRATORS Deb Carpentier (Regina, SK) – Prairie Region Réal Lamarche (Quebec City, QC) – Quebec Region

4 OSTOMY CANADA WINTER 2023

which resonates perfectly with Ostomy Canada’s vision. I believe in the vision of living life to the fullest, cherishing every moment, and embracing the journey with positivity and enthusiasm. n

Ian MacNeil (Ottawa, ON) – Ontario Region

Heather Twele, BA English Honours,

Andrea Manson (Parksville, BC) – Pacific Region Janet Paquet (Hamilton, ON) – Ontario Region Joan Peddle (Moncton, NB) – Atlantic Region

Assistant Editor Tammy Hunter, Graphic Designer Lorne Aronson, Advertising Manager Réal Lamarche, Translator of French content

PILLAR ADVISORS

Sustainability – Dana Upma and Stephen Maybee Advocacy & Government Relations – Ian MacNeil and Joan Peddle Engagement and Support – Deb Carpentier and Andrew Joseph (AJ) Leveille Marketing and Communications – Stephanie Grace and Troy Curtis Partner and Relationship Support – Andy Manson and Randy Hull MEDICAL LIFESTYLE ADVISORY COMMITTEE Karen Bruton NSWOC - RN BScN, MCICS-WH WOCC(C) Dr. Zane Cohen Senior Colorectal Surgeon, Sinai Health System - M.D., F.R.C.S.(C) Lisa Harris Registered Physiotherapist - BSCPT CAFCI MCPA Rory Hornstein Registered Dietitian - RD, BED Andrea Manson NSWOC - RN, BSN, NSWOC, NCA Rose Raizman Personal Health Coach - RN-EC PHCNP NSWOC WOCC(C) MSC MSCN Dr. Tim Sproule Acting Chief Plastic Surgery, Scarborough Health Network - MD FRCSC Dr. Shabita Teja, Naturopath and Pharmacist - BSC (PHARM), ND Lauren Wolfe NSWOC - RN, BSN,

OSTOMY CANADA CONNECTS Dana Ypma Tiffany Shorson SOCIAL MEDIA/WEBSITE Yaser Nadeem (Webmaster) Address all Correspondence to Ostomy Canada Society, 5800 Ambler Drive, Suite 210, Mississauga, ON L4W 4J4 Tel: 1-905-212-7111 Toll free: 1-888-969-9698 Fax: 1-905-212-9002 Email: info1@ostomycanada.ca www.ostomycanada.ca­ Charitable Registration No. 119277093RR0001

MCLSC (WH), NSWOC, CWOCN

OSTOMY CANADA MAGAZINE Lisa Gausman, BA Humanities, Senior Editor Julie Grzela, Assistant Editor Janet Paquet, Assistant Editor

www.ostomycanada.ca/ our-board-and-staff

EDITOR’S NOTE Buckle Up and Hold your Breath, Literally!

In May, I accepted my dear friend’s invitation to join her family at their timeshare in Orlando. I was hesitant due to the amount of volunteer work I was facing with Youth Camp and the Summer magazine. At the last minute, I left my laptop at home and got on a plane. I really needed the break and knew I would have a fantastic time. I had been to Disneyland, CA in 1991 but this was my first time to Disney World and what great timing as they were celebrating their 100th birthday! At some time, I had heard Eric Polsinelli of Vegan Ostomy talk about the Disability Access Service (DAS), so I asked Dr. Google for more information. www.youtube.com/watch?app=desktop&v=Q8SZnwU-jg4 Upon arrival, we headed to Guest Services to purchase our Day Passes and to obtain a DAS. It was super simple to navigate. The clerk asked me what kind of disability I have and I replied that I suffer from Crohn’s disease and have an ostomy. There was a form to fill out, then she guided us to download the app on our phones (*tip: remember to access the free Wi-Fi for the Park!) and then she walked us through a brief description on how to navigate the DAS. disneyland.disney. go.com/en-ca/guest-services/disability-access-service A couple of key points: you don’t need to provide a medical diagnosis or even go into detail about your condition. You just need to explain why your condition makes waiting in line difficult. The guest you’re requesting the DAS for must be present during registration; this is because their photo will be taken. Up to six people are allowed on one pass. My friends are very familiar with the Park and were excited to show me their favourite rides. Having a high output jejunostomy, which is extremely unpredictable, I am well-trained in the concept of locating where the bathrooms are wherever I go. Seeing a washroom as we walked toward our first ride in TomorrowLand, called the People Mover, which provides a bird’s eye view of the entire Park, we stopped so I could ensure my pouch was empty. A short walk later, we entered the ride, and my pouch had again filled up with air (not gas, air - Haha, that’s what I call it!) It was ballooned up so much that the lap belt on the ride was difficult to fasten. At this point, my concentration was fully on my expanding pouch, not the Park view! Our car entered a dark area, apparently a beautiful, starry galaxy, and the cars stopped and remained stopped. After a few minutes, as I was undoing my belt on my shorts, I quietly announced to my three friends, “Hey guys, hold your breath for a minute or two and I mean, HOLD IT! It is going to really smell badly!” The ride began to move, so I pounced on my opportunity, in the darkness to remove my clip and let the air escape; there is always that fear that it may not entirely be air, but I am a 34-year veteran. I quickly tucked my pouch back in and did up my belt just as our car picked up speed and approached the daylight. From the car behind us, we heard a young man say, “Hey, sorry guys!” They all laughed and replied, “Dude, that was rank!” We, four looked at one another and also laughed. Voilà! There was a sense of relief as I feelt the anxi-

ety leave my body. The DAS worked perfectly, especially given it was that kind of day with one bathroom stop after the other. I blame the six times that we ate at Taco Bell that week!

I rode three rollercoasters, something I never do. The cherry on the top was our last stop for Pineapple Dole Whip treats before the breathtaking (no pun intended) fireworks’ display. disneyworld.disney.go.com/en_CA/dining/ magic-kingdom/aloha-isle. We had a blast!

When life presents an opportunity that seems insurmountable, do your research and find ways to work around obstacles. Obstacles may be hurdles but hurdles are made to jump over.

Producer Noel Young says, “‘Ostomate’ is a short documentary showcasing the inspiring stories of Lisa Gausman and Oliver (Ollie) Hamilton. This film offers an intimate look into the lives of these individuals who’ve undergone ostomy surgery, showing their resilience and strength. The purpose of this film is to raise awareness of Ostomy Canada Society and Ostomy Canada Youth Camp. My friends and I poured our hearts into creating this film during our first year at film school (SAIT). We’re thrilled to share our work with you!”

Film Made by Noel Young, Aiden Latka, Rohan Hanson, Marco Fernando, John Arroza, and Jared Somerville.

Follow this link to watch, like, and share. youtube.com/watch?v=-CUUAok4_ZU

As the Senior Editor, I send apologies for the delay of the Summer 2023 magazine. Various health issues and a lack of helping hands were contributing factors. Ostomy Canada seeks content finders. 75% of my role is finding, chasing, and producing content. Submissions coming from readers has declined greatly. If you can help in this role, email me at lisa.gausman@ostomycanada.ca.

Lisa Gausman, Senior Editor

WINTER 2023 OSTOMY CANADA 5

EXECUTIVE DIRECTOR’S MESSAGE

Dear Friends and Supporters of Ostomy Canada Society, I am delighted to address you in this issue of Ostomy Canada as the Executive Director of Ostomy Canada Society. Our organization has a long history of serving the ostomy community, and it is my privilege to continue that legacy.

As we reflect on the past year and look ahead to the future, I am pleased to share some highlights from our Annual General Meeting (AGM) and provide an update on the incredible work being done by Ostomy Canada.

The 2023 AGM was a pivotal moment for our organization.

Held in person for the first time in four years, it brought together our dedicated board member volunteers and staff to celebrate our accomplishments. It also set the course for our continued growth and service to the ostomy community. During the meeting, we reflected on the challenges and successes of the past year. One of the key takeaways was the unwavering commitment of our supporters, Chapters and Groups, and volunteers. Your dedication to the ostomy community is truly inspiring, and it is your passion that drives us to expand our reach, offer more resources, and continue to be Canada’s voice and agent of change for people living with an ostomy.

We also shared some exciting updates regarding our ongoing initiatives and projects. Thanks to our virtual resources and webinars, our awareness and support programs have reached more individuals than ever before. For the second year since COVID hit and under Working Together: Ostomy Canada Society 2023 Achievements

4

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4 Webinars VISITOR TRAINING PROGRAM

48 new

visitors trained since the online launched in April 2023

2

Ostomy Canada magazines

over 1329 Bravery Bag Covers distributed since Dec. 2022

37 CAMPERS

attended Camp &

10 volunteers

Step Up for Ostomy over $45,800 RAISED and counting.

Donations remain open until March 31, 2024

6 OSTOMY CANADA WINTER 2023

new administration by dedicated volunteers, Ostomy Canada Youth Camp was a huge success. Ostomy Canada’s advocacy efforts continue to push for better access to ostomy care and supplies as well as increased awareness about the challenges faced by those with an ostomy. We are actively collaborating with healthcare professionals, ostomy manufacturers, and other advocacy organizations to ensure that the needs of our community are heard and addressed.

In the pages of this magazine, you’ll find inspiring stories, helpful tips, and valuable insights from fellow ostomates and healthcare professionals. Our community is a source of strength, and we encourage you to engage, share your experiences, feedback, and ideas as we continue to grow and improve our services.

Thank you for being a part of our incredible journey. We look forward to another year of making a positive impact on the lives of ostomates across the country.

Best regards, Dana Ypma Executive Director Ostomy Canada Society

Chers amis et sympathisants de la Société canadienne des personnes stomisées, Je suis ravie de m’adresser à vous dans ce numéro d’Ostomy Canada en tant que directrice générale de la Société canadienne des personnes stomisées. Notre organisme et la communauté des personnes stomisées partagent une longue histoire et j’ai le privilège de perpétuer cet héritage.

Alors que nous faisons le bilan de l’année qui vient de se terminer et que nous nous tournons vers l’avenir, j’ai le plaisir de rapporter certains faits saillants de notre récente assemblée générale annuelle (AGA) et de faire le point sur l’incroyable travail accompli par la Société canadienne des personnes stomisées.

L’AGA de 2023 fut un moment charnière pour notre organisme.

Tenue en personne pour la première fois en quatre ans, elle a réuni les membres dévoués du conseil d’administration, les bénévoles et le personnel pour célébrer nos réalisations. Elle a également permis de tracer la voie pour assurer une croissance continue et servir la communauté des personnes vivant avec une stomie. Durant cette réunion, nous avons fait un retour sur les défis et les succès de l’année écoulée. L’un des principaux constats est l’engagement inébranlable de nos sympathisants, de nos associations et groupes, et de nos bénévoles. Votre dévouement envers la communauté des personnes stomisées au Canada est vraiment inspirant, et c’est votre passion qui nous pousse à étendre notre portée, à offrir plus de ressources et à continuer d’agir comme instigateur de changement et porte-étendard de la communauté.

Nous avons également fait des annonces emballantes concernant nos projets en cours. Grâce à nos ressources virtuelles et à nos webi-

naires, nos programmes de sensibilisation et de soutien ont atteint plus de personnes que jamais. Pour une deuxième année depuis l’apparition de la COVID et sous la nouvelle gestion de bénévoles dévoués, le Camp jeunesse de la Société canadienne des personnes stomisées a connu un énorme succès. Les efforts de défense des droits de l’organisme se poursuivent afin d’améliorer l’accès aux soins et aux fournitures de stomie et de sensibiliser davantage les gens aux défis auxquels sont confrontées les personnes vivant avec une stomie. Nous collaborons activement avec les professionnels de la santé, les fabricants de produits de stomie et d’autres organisations de défense des droits pour veiller à ce que les besoins de notre communauté soient entendus et pris en compte.

Dans les pages de ce magazine, vous découvrirez des histoires inspirantes, des conseils pratiques et de précieux renseignements provenant de personnes stomisées et de professionnels de la santé.

Notre communauté est très solidaire et nous vous invitons à vous engager, à partager vos expériences et à nous faire part de commentaires et d’idées pour nous aider à grandir et améliorer nos services.

Merci de faire partir de cette grande aventure avec nous. Nous voulons que l’année qui vient ait une incidence positive sur la vie des personnes stomisées partout au pays.

Cordialement, Dana Ypma Directrice générale, Société canadienne des personnes stomisées

Un travail d’équipe : Réalisations de la Société canadienne des personnes stomisées en 2023

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WINTER 2023 OSTOMY CANADA 7

CHAIR’S MESSAGE

First, I would like to tell you of the journey I have had in the past eight years, which has been the journey of wonderful experiences for a person living with an ostomy. This is the journey that gives back and repays the many who have assisted you throughout your ostomy years. I have held many committee positions: Regional Administrator, Vice Chair and Chair of the Board of Directors. My most rewarding experiences have been the conception of the Disability Tax Credit (DTC) Committee and that of one of our primary support systems, the Visitor Program. I encourage each and every one of you living with an ostomy to become a volunteer and/or supporter of Ostomy Canada Society. Volunteering within Ostomy Canada is a rewarding journey and one that you will not regret. Please take a moment to consider and fill out an application on our website.

As you are aware, my term as Chair of Ostomy Canada ended on September 16, 2023. I want to take this opportunity to thank each of the directors who sit on our tremendous Board for their dedication and loyalty to our society and especially the support that they offer to all people living with an ostomy. I am thankful for the support of our ostomy groups in Canada and the many people whom I have met over the years. The voice of people living with an ostomy has been my reward, those with an ostomy and those without an ostomy. I want to especially mention the partnership Ostomy Canada Society has had with NSWOCC, and the many other partnerships involved with OCS. I will remain on the Board as a Director for another one-year term and will continue with my passion for Advocacy, the Disability Tax Credit, and the Visitor Program.

It gives me immense pleasure to introduce our newly elected Chair of the Board of Directors, Jacqueline Bloom. Jackie lives in New Brunswick and is personally familiar with living with an

ostomy. She began her working career as a nurse, made the change to health-related organizations and is very experienced and knowledgeable in fundraising, governance, and finance.

I also want to welcome Janet Paquet from Hamilton, ON to the position of Vice-Chair. 2023 is the first year in many that Ostomy Canada will have a Vice-Chair.

Janet is an energetic coordinator for Ostomy Canada Youth Camp and is dynamic in her role as co-President for her local Chapter.

We at Ostomy Canada are incredibly pleased to have Jackie and Janet involved and look forward to the knowledge and skills that they are bringing to the table. I personally wish them much success and look forward to working with them and the Board to further move us into another phase of transition and growth.

Ann Durkee-MacIsaac Past Chair of Ostomy Canada Society

D’entrée de jeu, j’aimerais vous parler de mon parcours au cours des huit dernières années, où j’ai vécu des moments extraordinaires en tant que personne stomisée.

Un parcours qui vous incite à donner au suivant et à remercier les personnes qui vous ont soutenu durant toutes vos années de stomie. Au cours de cette période, j’ai eu la chance d’occuper plusieurs postes : administratrice régionale, vice-présidente et présidente du conseil d’administration. Je suis particulièrement fière de deux réalisations : la mise sur pied du comité du crédit d’impôt pour personnes handicapées (CIPH) et de l’un de nos principaux réseaux de soutien, le programme des visiteurs. Aussi, j’encourage toutes les personnes vivant avec une stomie à faire du bénévolat pour la Société canadienne des personnes stomisées et à soutenir l’organisme. Le bénévolat au sein de ce groupe est une expérience

JACQUELINE BLOOM CFRE (Certified Fundraising Executive) is an experienced charitable sector leader with over 25 years’ experience in the healthcare sector. She has had experience in progressively senior roles with organizations such as Heart and Stroke Foundation, Spinal Cord Injury Ontario, Cystic Fibrosis Canada and most recently with The Friends of The Moncton Hospital Foundation. She is passionate about improving the health and wellbeing of all. As a fundraiser she truly enjoys seeing humans at their best, providing financial support to help others. Jacqueline has lived with Crohn’s Disease since the age of 17 and she has had an ileostomy for the past 33 years.

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JACQUELINE BLOOM, collectrice de fonds certifiée, est une dirigeante expérimentée dans le secteur de la bienfaisance et compte plus de 25 ans d’expérience dans le domaine de la santé. Elle a occupé des postes de plus en plus importants au sein d’organismes tels que la Fondation des maladies du cœur, Lésions médullaires Ontario, Fibrose kystique Canada et, plus récemment, la Fondation des amis de l’hôpital de Moncton. Elle se passionne pour l’avancement en santé et le bien-être de tous. En tant que collectrice de fonds, elle aime vraiment voir comment le soutien financier peut aider les personnes à mieux vivre. Jacqueline est atteinte de la maladie de Crohn depuis l’âge de 17 ans et vit avec une iléostomie depuis 33 ans.

enrichissante que vous ne regretterez pas. Prenez le temps d’y penser et remplissez la demande de candidature sur notre site Web. Comme vous le savez, mon mandat à titre de présidente du conseil d’administration de la Société canadienne des personnes stomisées a pris fin le 16 septembre 2023. Je profite donc de l’occasion pour remercier toutes les personnes qui siègent à notre formidable CA pour leur dévouement et leur loyauté envers notre société et surtout pour le soutien qu’elles offrent à toutes les personnes vivant avec une stomie. Je ne peux également passer sous silence la merveilleuse collaboration de nos groupes de soutien au Canada et des nombreuses personnes que j’ai rencontrées au fil des ans. La voix des personnes touchées par la stomie m’a beaucoup apporté, qu’elles vivent avec la maladie ou non. Je voudrais tout particulièrement mentionner la belle relation que j’ai eue avec les infirmières spécialisées en plaies, stomies et continence au Canada, ainsi que les nombreux autres partenariats conclus avec la Société canadienne des personnes stomisées.

Je poursuivrai mon implication au sein du conseil d’administration pendant encore un an et je continuerai de soutenir la défense des droits, le crédit d’impôt pour les personnes handicapées et le programme pour les visiteurs.

C’est donc avec immense plaisir que je vous présente Jacqueline Bloom, notre nouvelle présidente du conseil d’administration.

Jackie vit au Nouveau-Brunswick et sait ce que c’est que de vivre avec une stomie. Elle a commencé sa carrière professionnelle en tant qu’infirmière, s’est reconvertie dans les organisations liées à la santé et possède une grande expérience et de bonnes connaissances en matière de collecte de fonds, de gouvernance et de finances.

Je veux également souhaiter la bienvenue à Janet Paquet, d’Hamilton en Ontario, au poste de vice-présidente du CA. L’année 2023 est la première depuis de nombreuses années où la Société canadienne des personnes stomisées aura une personne à la viceprésidence. Janet est une coordonnatrice énergique pour le Camp jeunesse de la Société canadienne des personnes stomisées et son dynamisme ne fait aucun doute dans son rôle de coprésidente de sa section locale.

La Société canadienne des personnes stomisées est extrêmement choyée d’avoir Jackie et Janet dans ses rangs, et nous profiterons grandement des connaissances et des compétences qu’elles apporteront autour de la table. Je leur souhaite personnellement beaucoup de succès et je me réjouis de travailler avec elles au sein du CA dans cette nouvelle ère de transition et de croissance.

Ann Durkee-MacIsaac Ancienne présidente de la Société canadienne des personnes stomisées

OSTOMY CANADA SOCIETY’S MISSION STATEMENT Ostomy Canada is a non-profit volunteer organization dedicated to all people living with an ostomy, and their circles of support, helping them live life to the fullest through advocacy, awareness, collaboration and support.

OUR VISION STATEMENT Canada’s voice and agent of change for people living with an ostomy

ÉNONCÉ DE MISSION La Société Canadienne des Personnes Stomisées est un organisme bénévole sans but lucratif qui se consacre à toutes les personnes vivant avec une stomie et à leurs cercles de soutien, en les aidant à vivre pleinement leur vie grâce à la défense des droits, à la sensibilisation, à la collaboration et au soutien.

VISION La voix et l’agent de changement du Canada pour les personnes vivant avec une stomie

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WINTER 2023 OSTOMY CANADA 9

Ostomy Canada Society Attends Alberta Summit to Ask for Access to More Care for People Living with Ostomies

by Ann Durkee-MacIsaac

MLA Jennifer Johnson, Ann Durkee-MacIsaac, Cathy Harley

On October 5th, I had the pleasure to attend the third summit held by NSWOCC. Summits were previously held in Nova Scotia and New Brunswick and most recently held in Red Deer, AB. The audience was invitees from the provincial government, NSWOC’s, associates from hospitals, and patients. The ask was for ‘Access to more care’ for persons living with ostomies in Alberta.

My place on the agenda was to tell of my journey from the patient’s perspective of living with an ostomy.

Difficulties include lack of care from a NSWOC due to one not being available in a close-by location, the distance necessary to travel to receive care when one lives in a rural area, the high costs of devices necessary for a person with an ostomy, and the fear that this journey is not only one of physical issues but that of medical issues as well. Recognizing over the years that we need to advocate for access to more care, has prompted Ostomy Canada Society to strengthen its partnership with NSWOCC, and hence has given me the opportunity to be involved. Ostomy surgery is indeed a journey, one that changes lives and most often takes from one to two years to recover from both physically and mentally. There are many people who experience challenges such as sexual dysfunction, or social isolation, or mental health challenges like hopelessness, suicidal thoughts, a diminished quality of life, and depression. For all of the above, the patient requires access to care to seek treatment.

Many thanks to NSWOCC for giving Ostomy Canada and me the opportunity to inform the symposium attendees what life is like with an ostomy and what care we require. n Ann Durkee-MacIsaac, past Chair of OCS

NSWOCC PRESIDENT’S MESSAGE

Greetings from the NSWOCC! 2023 is quickly coming to a close and so much has happened that it is hard to keep up, but the NSWOCC continues to work on the behalf of persons with stomas. Here are a few of this year’s activities.

The 42nd Annual NSWOCC Conference occurred at the Westin Ottawa from May 3 to 7, 2023 and was wonderfully attended by enthusiastic NSWOCs, SWANs, allied healthcare professionals and industry representatives.

Ostomy Canada Society was well represented by Board Chair Ann Durkee and Joint Advocacy Committee Chair Ian Mac Neil. It was both energizing and humbling to be meeting face to face again. The personal touch and collegiality was so missed over the past three years and never has it been as important as it is now when being faced with the challenges being experienced in the Canadian healthcare system. Sessions on both advanced and basic ostomy care were offered (and they were fully attended!) allowing nurses and NSWOC’s to build on current knowledge and expertise. People with stomas deserve the most current and best practices available. These sessions will help enable healthcare professionals to provide that care. Also, Best Practice Recommendations for Parastomal Hernia Prevention, Assessment, and Management were introduced at the conference by Dr. Kimberly Le Blanc. Parastomal hernias are an avoidable but unfortunately frequent complication associated with having a stoma. It can have a profound effect on quality of life, so best practices in care are imperative.

Across the country, work continues on promoting the role of the NSWOC and recognizing the value brought to the healthcare system by this role. Every patient with an ostomy, wound, or continence issue deserves to have an NSWOC involved in their care. It has been over a year since the Nova Scotia summit occurred in Halifax calling on the government to consider strengthening patient access to specialized care. A second summit was held June 1, 2023 in Fredericton, New Brunswick bringing together government, administrators, clinical leaders, patients, and industry. The goal was to address the access to specialized care for patients residing in NB. A third summit took place in Alberta on October 5, 2023. Thank you to Ostomy Canada and Ann Durkee for being a strong partner and voice for people living with an ostomy. Ostomy Canada is one of our partners at these summits. Something new is learned at every summit and then applied to the next one. This wave of patient advocacy needs to flow across the country.

Wishing everyone a safe and wonderful winter!

Marcia Leard, RN, BScN, NSWOC, WOCC(C)

10 OSTOMY CANADA WINTER 2023

UOAA PRESIDENT’S MESSAGE

Greeting Neighbours! In August, the ostomy community got together at the UOAA’s 8th national conference in Houston, Texas.

It was a reminder of how powerful and life-changing simply being with people just like you can be. It was a delight to see the happy faces of all the first-timers and just as much joy to see old friends.

UOAA’s 8th National Conference in Houston, Texas in August was a reminder of how powerful it is to simply be in a room with so many people just like you. We thrive and flourish at this unique event whether it be the educational sessions, free stoma clinic, networking opportunities, or social events. We hope you can join us at the next conference in 2025.

Our National Ostomy Awareness Day was celebrated on October 7 and embraced the theme, “Ostomies Are Life-Savers.”

There were a wide variety of ways for people to support the ostomy community while spreading awareness and erasing the stigma surrounding this life-saving surgery. Our annual Run for Resilience Ostomy 5k was held virtually as well as in person in multiple cities.

Our Ostomy Day Awareness Champion, Daniel D. Garza hosted a virtual happy hour with trivia, music, and fun. The capitol buildings in Louisiana and Pennsylvania were lit up in UOAA colors of green and blue and proclamations were signed in ten states declaring October 7th Ostomy Awareness Day.

Support Groups around the U.S. came together, some hosting vendor fairs, like the one in Washington State where WOC Nurses spoke about ostomy related challenges. The Wound, Ostomy, and Continence Nurses Society™ (WOCN®) had an all-day free ostomy education day. The Color of Crohn’s and Chronic Illness Foundation partnered with UOAA on a live online event on October 5th entitled “Misconceptions with an Ostomy, Don’t Get It Twisted” and more.

These are just some of the ways Ostomy Awareness Day was and is celebrated. It is evident that the way individuals and communities come together to promote ostomy awareness and erase the stigma of this life-saving procedure is none other than outstanding. I’m excited that next year is World Ostomy Day. We’re looking forward to working alongside all of you in Canada and around the world to make this the biggest awareness day yet.

Life is good with an ostomy, sharing life’s moments with other people living with an ostomy or continent diversion, and letting new ostomates know that they are not alone.

We have many exciting new ventures taking place soon and I can’t wait to share with you as each one comes to fruition. Remember that you’re invited to check out our website at ostomy.org, our Facebook and Instagram page to stay in touch and learn more.

Sincerely, Cheryl Ory, President, UOAA

WINTER 2023 OSTOMY CANADA 11

Get the Support You Need on Your Ostomy Journey with

Amanda

to me, it was huge!

Thank You

To you, it may have been a little thing...

Thank you for being ex tra caring & thoughtf ul in helping me navigate th rough this frustrating time with m y ostomy su pplies.

It was so gr eatly apprec iated!

Cindy

It’s normal to have complex feelings if you’re living with an ostomy. On the one hand, it can be a lifesaving procedure and can drastically improve the symptoms of chronic conditions, and along with it, your quality of life. Caring for your stoma can take some time to get used to and can lead to feelings of anger, sadness, and low self-esteem.

Wherever you are on your ostomy journey, whether you’re just getting started, have a temporary stoma, or are an experienced ostomate, Wellwise by Shoppers™ is here to offer advice, support, and most importantly, the products you need.

We spoke to the manager of the Wellwise® store in Dryden, Ontario, who explained how her store is going above and beyond for the ostomy community.

The products you need – when you need them.

The most effective way of supporting ostomy clients is to ensure that the products they need are available at all times, explains the Wellwise® Dryden store manager. Usually, a box of flanges will last four weeks, but that’s not always the case. On a particularly difficult day, a customer may go through up to four flanges in 24 hours. To reduce the stress and anxiety caused by this situation, Wellwise® clients can count on their local store at a moment’s notice and can rest assured that they will never be left without a product.

As most people living with an ostomy will know, it can take a while to find the brand and pouch size that best fits you. Likewise, ostomates tend to have a preferred brand of adhesives, creams, and supports that best suit their skin’s sensitivities. This is why Wellwise

by Shoppers™ has a custom order service available for our clients with an ostomy so they’re always able to access the exact products they need. Our clients with an ostomy can leave their order speci12 OSTOMY CANADA WINTER 2023

fication on file at their local Wellwise® location and arrange to pick it up monthly or biweekly. In an emergency, you can call your local Wellwise® store and we will usually be able to prepare your products for pickup within 24 hours.

The small touches that make a big difference.

The most important way to take care of those people living with an ostomy is by assisting whenever possible, explains Wellwise® Dryden’s store manager. From researching new products, to listening to struggles about skin breakdown and helping to find a solution, it doesn’t take much to go the extra mile. Clients are encouraged to register with the manufacturer of their products. This allows them access to an educated ostomy nurse over the phone seven days a week. Once registered, clients can receive samples of new products to try before purchasing a full box.

Sometimes, however, all that’s needed is a shoulder to cry on or a person to vent to. Our friendly team understand this and will always strive to be extra caring, helpful, and thoughtful when helping those living with an ostomy.

Bringing the ostomy community together.

When Wellwise® Dryden’s store manager wasn’t able to provide the assistance that one client had requested, she thought outside the box to help them get the support they needed. Once a month, she opens the doors of her store to a group of women who needed help finding companions in the same situation as themselves. The group is a safe place to chat, support each other, work through their difficulties, and celebrate triumphs together. The group has been a huge success and even though it’s currently on pause, it aims to get up and running again soon.

At times navigating your ostomy journey can feel overwhelming. Wellwise by Shoppers™ aims to offer the support, advice, and products to help make your new normal easier. You can browse the range of products at wellwise.ca or head to your local location and speak with our friendly and knowledgeable team who are happy to help you find what you need. n Disclaimer: The information presented in this article is designed for educational purposes only. You should not rely on any information in this article as a substitute for professional medical advice, diagnosis, treatment, or as a substitute for professional counseling care. If you have any concerns or questions about your health, you should always consult with a physician or other healthcare professional.

This article was submitted by Wellwise by Shoppers as part of their Diamond level sponsorship support of the 2023 Step Up for Ostomy Program.

We Think You’ll Agree:

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Hollister.

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Ostomy Care Making a difference in the journey of life

ASK AN NSWOC

Karen Bruton RN BScN IIWCC MCISc-WH NSWOC WOCC(C)

Q

the importance in promoting a positive environment for your daughter amongst her camp friends.

I’ve been managing my stoma for many years and have had no issues, which I am grateful for!

I am starting to develop a raised bulging around my stoma. My physician said I have a parastomal hernia.

I was told that this occurs when a portion of the colon pushes through a gap in the abdominal wall around the stoma. My physician tells me that I need a stoma hernia belt. I have asked at the local drug store and they do not carry any. Where can I buy one? ~Donna

This year I was faced with flooding on our farm and I had to stay in a shelter away from my home and I found that I was caught off guard by not bringing my appliance supplies. I had to stay in a shelter for three weeks and it was nerve wracking not having my ostomy supplies. I want readers to know how important it is to have an emergency pack to grab while rushing out the door in emergency situations. ~Bob

A

A

Depending on where you live, it may be difficult to find a supplier who can measure your abdomen and determine the placement of your stoma for the belt. Specialty medical supply stores may measure you and then order the product from the manufacturer. Typically, stoma hernia belts are not kept in stock as they are unique to each individual body. For a good fitting stoma hernia belt, the cost runs from $100 to $300 but it may be worth it as it is a product that could enhance the quality of your life. Online there are a moderate number of stoma specialty stores in Canada but you must be sure of your measurements.

The hernia may be repaired by surgery. The surgeon would move your stoma away from the hernia site. Not all persons would be eligible for surgery as it depends on many factors. There may also be a slim chance the same thing could evolve in the future.

Q

My 14-year-old child really wants to go to camp this coming summer. Recently she had to have an ileostomy. Most of the time she is able to change her appliance but occasionally has issues and gets very frustrated. I’m fearful she won’t have the support or knowledge from the nurses who are at the camp and may get teased by fellow campers. What do I do? ~Brianna

A

As a mother it is so hard to let go but it is the most important thing you can do in order to help your child gain independence and confidence in themselves. You might consider Ostomy Canada’s Youth Camp which is held every summer. Information can be found on Ostomy Canada’s website. www.ostomycanada.ca/ ostomy-canada-youth-camp If your daughter is set on a special camp, I suggest contacting the administrator to enquire what support is available for your daughter and her needs for her ostomy. You may want to engage with the camp health staff to learn how they care for a stoma. You can share your daughter’s specific needs and routine. If nurses are present they may already have the skills in caring for ostomies. Express

14 OSTOMY CANADA WINTER 2023

Q

Yes, Bob, it is so important to have an emergency kit ready at a moment’s notice! At your front door, keep a supply of appliances and accessories to last for one to two weeks. It is also wise to keep one or two appliances either in a purse or car for emergencies when you are out. If you visit relatives frequently, it is another ideal place to keep products that can be available when needed. No matter where you keep your emergency supplies, be sure that once every six months, you rotate the supplies in the kit so that the older supplies are used and newer supplies are added.

Q

I have diverticulitis and had to have a temporary colostomy at age 55. It was reversed a year later. I coped well mentally, knowing it was only temporary. My symptoms which include nausea, fever, stomach pains and constipation are returning one year after the reversal. My surgeon is suggesting that he needs to do further exploration but mentioned that there might be a need for a permanent colostomy. I am now so depressed knowing it would be permanent. I feel I will not cope well. What am I to do? ~Trudy

A

I am so sorry to hear about your situation! I see you are full of emotions and fears. It is important for you to reach out to your family and friends to discuss these fears. Talking is the best medicine for mental health. Counselling is another way to openly discuss your concerns as emotions can overtake our mental status.

Look back on how you coped with your first surgery. What made you successful in caring for your stoma? What coping skills did you use? What friends or family members helped you or were supportive in your emotional needs? What was your social life like with the temporary colostomy to now? Review the symptoms you are now having; did you have any symptoms with your temporary colostomy? Weigh the pros and cons of continuing to live without the colostomy to living with a colostomy. Quality of life is important in order to be happy when you are symptom free! I wish you the best for the future, Trudy.

April Parsons Photography

Inc.

UN GRAND HOMME – A GREAT MAN

Jean-Pierre Lapointe 1941 – 2023

Montréal, le 9 octobre 2023, à l’âge de 81 ans, est décédé Jean-Pierre Lapointe, policier retraité de la Sûreté du Québec. Il laisse dans le deuil son épouse Mme Nicole Mc Hugh, ses enfants Stephan, Patrick et Isabelle Lapointe (Vincent), ses petits-enfants Félix, Clara et Robin Qui est Jean-Pierre ?

• Directeur et trésorier de l’Association Canadienne des Personnes Stomisées durant plusieurs années (UOAC – OCS – ACPS) il a été aussi coordinateur francophone.

• Récipiendaire du Grand Prix Renaissance en 2007.

• Président de Friends of Ostomates Worlwide Canada (FOW Canada) et toujours personne ressource.

• Président et membre honoraire de l’Association d’Iléostomie et de Colostomie de Montréal (AICM) depuis plus de 50 ans.

• Président fondateur, vice-président et membre honoraire de l’Association québécoise des personnes stomisées (AQPS).

• Président fondateur du concours Grand Prix Renaissance pour le Québec et pour le Canada.

• Durant plusieurs années il a siégé au conseil d’administration, président du comité de développement du bénévolat et a participé à la création de l’évènement « Relais pour la vie » de la Société Canadienne du Cancer, division Québec (SCC).

• Il a reçu de nombreux prix, médailles et certificats du gouvernement du Québec et du Canada, de la Société Canadienne du Cancer (division Québec) (SCC) et de la Sûreté du Québec et plus encore.

Il a toujours pris son temps pour écouter, toujours avenant, toujours souriant, il répondait toujours à toutes les interrogations.

Il a été le précurseur de la notion de « Vivre avec une stomie » en parlant de la maladie sans restriction, en partageant des trucs qu’il avait trouvés pour combler les lacunes ou les inconvénients qu’il nous arrive trop souvent de vivre comme personne stomisée et en s’identifiant ouvertement qu’il était une personne stomisée.

16 OSTOMY CANADA WINTER 2023

Il a participé activement à la création de l’Association québécoise des personnes stomisées (AQPS) qui se veut le regroupement des Associations régionales de personnes stomisées afin de rassembler les énergies pour aider et soutenir les personnes stomisées de toutes les régions du Québec.

Activement impliqué dans les négociations auprès du ministère de la Santé pour une allocation annuelle pour les personnes stomisées afin d’aider financièrement l’achat de l’appareillage; ceci de l’allocation de 300$ en 1981 jusqu’à la révision de 1200$ en 2018.

Il a été l’un des plus importants contributeurs à la vie des personnes stomisées au Québec et au Canada; Il a été une source d’inspiration précieuse pour beaucoup d’entre nous.

Jean-Pierre, homme distingué et imposant, manquera à toute la communauté des personnes stomisées.

Salut Jean-Pierre Texte par Réal Lamarche – informations et inspiration par Jude Ruest Montreal, on October 9, 2023, at the age of 81, Jean-Pierre Lapointe, retired police officer of the Sûreté du Québec, passed away. He is survived by his wife Mrs. Nicole Mc Hugh, his children Stephan, Patrick and Isabelle Lapointe (Vincent), his grandchildren Félix, Clara and Robin.

Who was Jean-Pierre?

• Director and treasurer of Ostomy Canada Society for several years (UOAC – OCS). He was also the francophone coordinator.

• Recipient of the Great Comeback Award in 2007.

• Past President of Friends of Ostomates Worldwide Canada (FOW Canada) and always the go-to person.

• Past President and honorary member of the Ileostomy and Colostomy Association of Montreal (AICM) for over 50 years.

• Founding President, Vice-President and Honorary Member of

Become a Certified Ostomy Visitor the “Association québécoise des personnes stomisées” (AQPS).

• Founding President of the Great Comeback Award (Grand Prix Renaissance) for Quebec and Canada.

• For many years, served on the Board of Directors, Chair of the Volunteer Development Committee and participated in the creation of the “Relay for Life” event of the Canadian Cancer Society’s, Quebec Division (CCS).

• He received numerous awards, medals and certificates from the governments of Quebec and Canada, from the Canadian Cancer Society, Quebec Division (CCS) and from the Sûreté du Québec and many more.

He took time to listen and answer questions, and he was always friendly and smiling.

He pioneered the concept of “Living with an Ostomy” by talking about the disease without restriction, sharing tips to fill in the gaps or inconveniences that we too often experience as a person living with an ostomy, openly identifying that he was a person living with an ostomy.

He actively participated in the creation of the “Association Québécoise des personnes stomisées” (AQPS), which is the grouping of the Regional Associations of persons living with a stoma to pool our energies to help and support ostomy people in all regions of Quebec.

He was actively involved in negotiations with the Ministry of Health for an annual allowance for people with an ostomy to financially assist in the purchase of equipment; this increased from the $300 allowance in 1981 to the $1200 amount in 2018.

He has been one of the most important contributors to the lives of ostomy patients in Quebec and Canada and has been a precious source of inspiration for many of us.

Jean-Pierre, a distinguished and imposing man, will be missed by all the ostomy community.

Salut Jean-Pierre

Get The Support You Need! Ostomy Canada Society is proud to present the new online Ostomy Visitor Training Program.

Ostomy Canada Society and its Chapters are dedicated to complete rehabilitation for people living with an ostomy, through mutual aid, moral support, and education. The trained visitor is the heartbeat of the organization. Trained volunteers come in various sizes, shapes, ages, and genders.

They come from different walks of life, but they all have the common bond of having undergone ostomy surgery and are now living productive and happy lives. Potential visitors attend a training session that focuses on certain fundamentals of visiting: purposes and objectives, visitor responsibilities, phases of psychological adjustment, and concepts of basic care and management. Then the “Art of Visiting” is examined by looking at visiting techniques, frequently asked questions, types of visits, and potential problems. The Ostomy Visitor Program aims to reduce the emotional burden of people who have undergone or will undergo ostomy or j-pouch surgery so they may return to their former physical, social, and economic status.

The purpose of the Ostomy Visitor Program is to certify members of Ostomy Canada Society as trained visitors who are available to offer support. *Editor’s note – I found the online training program professional looking, thought provoking, and easy to navigate. It took me about an hour to complete. www.ostomycanada.ca/ ostomy-canada-visitor-program

Text by Réal Lamarche - Information and inspiration by Jude Ruest

WINTER 2023 OSTOMY CANADA 17

Ways to Identify and Control Anxiety

by Rose Raizman, RN-EC, PHCNP, NSWOC, WOCC (C), MSc, MScN.

This self-help article will expand on the concept of anxiety; what it is, what it is for, and what to do with it.

In a crisis situation, excitement and anxiety grow. Anxiety is the body’s necessary and natural response to danger. Fear is an instinct for survival. At first, the alarm is raised, which helps you to realize the danger, and then fear appears in various manifestations: running, attacking, hiding, shrinking out of sight. It’s a healthy mechanism, but it can show up even when you feel fine.

HOW ANXIETY WORKS.

Anxiety helps a person to successfully cope with critical situations and adapt to new life circumstances. It is necessary and normal in a crisis, because it activates the hormonal system and resources.

Energy reserves are released so that we can act towards safety.

It’s normal to experience a range of emotions and to hear opposing thoughts at the same time. The layering of thoughts reveals anxiety even more.

• Thank goodness that it’s not me • I’m angry that I can’t do anything • I’m jealous of those who are okay The more stable and predictable the world is, the more expectations coincide with reality, and the less anxiety there is. The dynamism and unpredictability of the modern world constantly increases anxiety. If a person does not understand what awaits him, anxiety increases. It turns into fear, which can lead to panic attacks. Then comes neurasthenia (chronic fatigue syndrome), then depression, and so on.

When we work with beliefs and thoughts that help us see reality as it is with all the current challenges, we can make adequate decisions.

WHAT PREDISPOSES US TO ANXIETY?

Genetics. We have certain genes that are responsible for predisposition to anxiety: there are people whose nervous system is strong and slow, strong and fast, or slow and weak, or weak but flexible.

This determines what level of anxiety a person has.

Physiology. Here we are talking about hormones: thyroid, hormone rearrangement during pregnancy, breastfeeding, menopause in women. There is a triad that women need to work with: Hormones, Emotions, and Thinking. We need to gain a balance of neurotrans18 OSTOMY CANADA WINTER 2023

mitters. When the balance of neurotransmitters is disturbed, cells cannot transmit signals to each other and anxiety increases.

Relationship with parents. This is the factor that psychology can work with.

It commonly appears if: • parents were prone to anxiety. For example, they did not assume responsibility, did not solve problems, and reacted to every situation with panic.

• there was a divorce, which parents had difficulty adjusting to, and turned to depression and alcohol use.

• parents suffered from mental disorders, from addiction to schizophrenia.

Children have a greater risk of repeating these paths even if they have a strong psyche and a good hormonal background. A child learns parental responses, even if there is no such foundation for it.

You can work to separate your strategies from your mom’s and your dad’s, while strengthening the deep bond between you as a child and parent.

WHY DO PEOPLE REACT DIFFERENTLY TO EVENTS?

A lot depends on our interpretation of a situation. The most common perceptual error is to think, “I am in danger”. In any alarming situation and even in our thoughts, our body receives a signal of self-preservation. I convince myself that if I’m afraid of something, then it really exists. In order not to succumb to fear, it is necessary to distinguish between a real threat and an imaginary one.

A real threat is a car braking abruptly in front of you, an icicle falling above you, or the smell of gas/fire. You have anxiety and mobilization to resolve this issue. The imaginary threat is to be afraid every day to cross the road because something might happen. Or to be afraid to walk under roofs, even if there are no icicles. Ostomates often worry that their pouch will leak and they will be embarrassed.

Our behavior is programmed to avoid a possibly uncomfortable situation by avoiding everything. The most common reaction in a crisis is to not be proactive and to not change anything, despite the changes occurring around you. In reality, we want to be able to make a decision right away in order to make an improvement. We must ask, “Why is this happening?” When we are scared, the body produces a supply of energy that we need to use to save ourselves.

In the case of real danger, this is normal. In the event that there is

How to Get Anxiety Under Control – 6 Easy Ways!

Where do you start when anxiety arises?

Be in the here and now. We need to stop thinking about exploded pouches, embarrassment about the inability to control the smell, no money to survive, a catastrophe, the end of the world.

STOP TECHNIQUE (Increases self-awareness, helps us to stay calm and quickly find a solution in the present tense) *This is a Conscious Choice technique. www.juliamccutchen. com/blog/conscious-living/choice It helps with fears, sadness, in cases of confusion, etc.

It brings you back to reality, helps you quickly cope with emotions, and to not get distracted.

Ask yourself, where am I now? (Place and time, city, street, premises, date). Who am I now? (Last name, first name, and role you are in). What am I doing now? a) I continue to do everything that is in the plan or b) I do something else. What should I do now? (Solve problems that really need to be solved in this moment).

1

no danger, it is impossible to act randomly. You need to assess the situation first. In an internal and external crisis, it can often be difficult to determine where there is a real threat and where it is not.

HOW TO IDENTIFY A REAL THREAT?

Ask yourself, “What’s actually happening?” If what you’re afraid of isn’t happening to you right now, there is no threat.

We often shift the focus to negative details, we exaggerate them and think that everything will be bad, we will all die, or we will be left without money. We get stuck on the negative. It’s important to look at the big picture and start noticing either the good things or the neutral ones. One possible solution is to keep a Gratitude Journal. Write down what happened today that was good, or at least neutral. You need to show your brain that there are more good and neutral in things or that it just is what it is.

Catastrophizing is when we make a mountain out of a molehill; emotions run high and we immediately expect a disaster. False alarm is when we perceive everything that happens around us as a threat to our lives.

HOW TO EXPERIENCE AND SURVIVE ANXIETY?

We need to let go of the situation and experience the anxiety instead of avoiding it. Ask yourself, “What’s happening to me? I’m worried. Why am I anxious? Why do I feel this anxiety?” We begin to breathe deeply, to let the anxiety into the body. You can do physical exercises like squats or push-ups. You can jump on your heels to ground yourself. Feel your body and the surfaces near you. Inhale and exhale. You need to get back into your body and not fight your emotions. Accept the emotion, repeat the words, “All I feel is me.

I’m alive, I’m human, I feel everything. It’s normal to feel pain, to feel fear, to feel anxious and confused. It doesn’t make me weak, it doesn’t make me worse.” Inhale and exhale. Use the practice of being the Observer, learn to separate reality and speculation. n Rose is a member of Ostomy Canada Society’s Medical Lifestyle Advisory Committee.

www.centerforsharedinsight.com/blog/observerskill-overcome-lifes-challenges/11780

in physical activity. Do exercises in the morning 2 Engage and evening for 10-15 minutes. mindful of your sleep and nutrition that give your 3 Be body the energy it needs. relaxation using meditations. Jacobson’s re4 Practice laxation technique is a type of therapy that focuses on tightening and relaxing specific muscle groups in sequence. www.healthline.com/health/progressive-muscle-relaxation It’s also known as progressive relaxation therapy. By concentrating on specific areas of your body then tensing and relaxing them, you can become more aware of your body and physical sensations. Practice breath meditation – two seconds inhale, two seconds pause, two seconds exhale, two seconds pause. Then we tense and relax different parts of the body in succession. www.mindful.org/a-five-minutebreathing-meditation information hygiene. Turn off the news, turn 5 Conduct off social media, get out of the information noise until you feel restored. mindfulness when communicating with loved 6 Practice ones. Notice your use of catastrophic moods and phrases: “Everything is bad; we are all going to die.” Don’t say them. This is a direct command for your brain to reproduce these suggestions in reality. Your brain will look for confirmation that there is a danger. Limit communication about unpleasant topics.

These recommendations sound simple; they are easy to implement. Tune in, take a challenge for five to ten days, and in the end, upon seeing a significant difference, you will decide to follow them further.

WINTER 2023 OSTOMY CANADA 19

Partners to Support You on Your Bladder Cancer Journey

by Elaine Jeffery Paddle Steamer in Whitehorse

Will I have to buy new clothes to fit over the pouch?

Can I take a bath and get my stoma wet?

Will I be able to drive? Have sex? Be able to lift up my children/grandchildren?

These questions and many, many more are at the forefront of people’s minds when they learn they are going to have bladder removal surgery. In some cases, only a section of the bladder is removed, but usually this surgery means the bladder is taken out completely.

A cystectomy constructs an ileal-conduit or neo-bladder to handle the urine. (uvahealth.com/services/urology/cystectomy) The patient now wears an appliance (this makes me think of a refrigerator!) or ‘bag’ or ‘pouch’ on their abdomen.

Often patients receive this diagnosis from their surgeon after multiple tests and even treatments – but it still seems impossible that this could happen to them. They are often reeling in shock that this has actually come to pass, especially when they are told they will be contacted to arrange for all the pre-op testing and to schedule a surgery date. Their usually quick minds cannot form the questions they want to ask. The next thing they know; they are home wondering, “Now what?” This is where you can begin to build your support partners.

Many bladder cancer patients have already been in touch with Bladder Cancer Canada (BBC) to see what resources are available to assist them. (bladdercancercanada.org/en/) Did you know that bladder cancer is now the fifth most common cancer in Canada?

And yet, most people haven’t even heard of bladder cancer. People don’t feel comfortable talking about conditions that affect how they use the bathroom, so bladder cancer patients often suffer in silence.

As many as 12,000 Canadians are diagnosed with bladder cancer every single year!

Bladder Cancer Canada, in partnership with Wellspring Cancer Support Foundation, offers a well-trained roster of peer support volunteers who, in a timely manner, are able to speak with patients on the phone before and/or following their surgery. (wellspring. ca/wellspring-cancer-support-foundation) Equipped with peer sup20 OSTOMY CANADA WINTER 2023

port training, these volunteers provide support in a compassionate and informative way. Cancer survivors themselves, these volunteers know what it is like to face surgery as well as any challenges that may accompany their cancer journey, treatments, and come out the other side cancer free or dealing with chemo and radiation.

I am a Bladder Cancer Canada volunteer. Before I had my bladder surgery, I called BCC to see if I could speak with someone. I spoke with a woman in Saskatoon and one in Halifax. One had an ileo-conduit, and one had a neo-bladder. They gave me information that helped me to reach a decision, allowing me to feel like I was not alone.

The volunteers are accessible to you no matter where you live in Canada. When you call, BCC gathers information about the type of support you are looking for, and then they reach out to volunteers who most closely match your situation. If possible, they match volunteers who are of the same gender and the same age range. You can rest assured knowing that your information is kept confidential and that you will be speaking with someone who has had similar experiences.

Another important partner is your local Ostomy Support Group. You can find a full listing of the groups on the Ostomy Canada website under ‘support’ and then ‘local support groups.’

– (www.ostomycanada.ca/other-support-groups/#) Many support groups have trained volunteers who are willing to speak with people before and after their surgery. These volunteers know what it is like to live with an ostomy, and how to live life to the fullest!

At Ostomy Halifax, as at many other chapters and support groups across Canada, we have trained in-hospital visitors. A visitor must attend a nationally certified training session and have their certification renewed every five years. (www.ostomycanada.ca/ ostomy-canada-visitor-program) Again, they speak with you from the perspective of someone who has been where you are now. Our Visitor Coordinator in Halifax, Irene Stagg, matches callers with a trained visitor of roughly the same age and gender.

Regular monthly meetings are an excellent place to meet people from many different walks of life who are living with an ostomy.

Naujaat (pronounced Now E at) Arch marking the Arctic Circle in Nunavut

Cape of Good Hope sign

They may be working or retired, young or older, golfers, travellers, students, and all sorts of other fun and interesting things. You do not have to go through ostomy surgery, the before or the after, alone. n Please check out our website at: ostomyhalifax.ca or our Facebook page at www.facebook.com/groups/halifaxostomysociety.ca or our Instagram page at www.instagram.com/ostomy.hfx/?hl=en

re o r o t s In o re d t e v i l de do o r yo u r e re h a ny w ad a n i n Ca

Elaine Jeffery lives in Dartmouth, Nova Scotia, and is a member of Ostomy Halifax. She has served the group as President, Past President and as Youth Camp Coordinator.

Elaine is a Hospital Visitor and assists with training sessions for new visitors and with recertifications.

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WINTER 2023 OSTOMY CANADA 21

Blindsided: My Ostomy Story

By Stephanie Lalonde

The year was 2020. You know, the dreadful year On July 23, the colonoscopy was performed along COVID-19 struck the world and it felt like we were with a series of bloodwork. My colon did not look in the “Twilight Zone.” Anyway, I was cruising into good. I didn’t know what that meant exactly but I my final year of my 40’s feeling great. I had no ailcould clearly see that it wasn’t pink and healthy. On ments like so many people I knew, who were reachthe 24th, the results of my tests were in. My G.I felt ing their 50’s, had developed. I was laughing…until that with the extent of inflammation we were dealing I wasn’t. with, that the diagnosis was IBD (irritable bowel disOn July 4th I began to feel a little off. Just some ease) leaning towards Crohn’s disease. They started me mild cramps, nausea and diarrhea. I brushed it off on Prednisone to hopefully slow and stop the diarrhea.

Stephanie with because my period had started, the heat was horrid, A few days later, nothing had improved. I was gether husband, Mark 2022 (I never do well when it’s hot), and there ting worse and weaker. They added a douwas a huge stressor in my life. However, a ble dose of Remicade to my arsenal; again I had been dealing with this week went by and it didn’t let up. In fact, without success. Then it was decided to try for nearly a month. The only it had gotten worse. I was getting weaker a second round of Remicade as well as the option left was for me to have by the day. I went for a COVID test. That Prednisone, waiting days in between to too was negative. I went to the Emergency allow them to take effect. It was not worklife-saving surgery. At that room, where they took a second test, that ing, and when the Dilaudid wore off I was point I just wanted it all to too, was negative. I went back to emergency in so much pain. My body had become so stop. I couldn’t even grasp the two days later, to be sent home again with depleted and I had lost a ton of weight. (I no more information than I went in with had a lot to lose so I guess that was okay.) concept of what was about and very little help.

Then at the end of July after I had been to be done and how it would I had never been so sick in my life. dealing with this for nearly a month, the change my life forever.

Working with children had built me an only option left was for me to have life-savimmunity of steel. July 21st, I could barely ing surgery. At that point I just wanted it all get off my couch to get to the bathroom, which I frequented about to stop. I couldn’t even grasp the concept of what was about to be fifteen times a day. My family insisted I go back to emergency or they done and how it would change my life forever. were calling for an ambulance to come. I didn’t have the strength to On August 5th, 2020, I went into a five-and-a-half-hour surgo nor to argue, so I found every last ounce of energy I could muster gery. They reconstructed my abdominal wall as it had been herniated up and let them take me in. from my two C-sections, removed 75% of my colon and created an We went to a different hospital this time in hopes they would ileostomy. Everything went really well, until a few days later when further investigate. They had to wheel me in, COVID or not. I was my incision became infected and started opening up. My hemoglonot able to walk any distance, and needed help. After many painful bin was at a critical level and was not allowing my body to heal. I hours went by, I was seen and put through a CT scan. It concluded wasn’t going home any time soon. that I did have inflammation in my intestines. The gastroenteroloThe massive incision opened up almost entirely, as did the area gist said he wanted to perform a colonoscopy in a few days, and for around my new stoma. I couldn’t walk. I was too weak and very me to make an appointment and come back. I looked at him and nauseated. I needed a blood transfusion to get my hemoglobin up. very directly told him I was done being at home and that I was too My nightmare continued as I had to be put on a machine called a weak to make the trek back and forth. Consequently, they admitted negative pressure vac. It basically acted like a vacuum seal to keep me to the hospital. me closed while sucking out the fluids from within my abdomen. It 22 OSTOMY CANADA WINTER 2023

Above: Nov. 2018, my boys and my husband at our wedding before I got sick.

Left: Mother’s day 2023 with two of my sons. Dakoda (right) and Cooper (left)

needed to be changed three times a week, which meant I would be going home with this.

I stayed another three weeks in the hospital and was fortunate enough that COVID had quieted enough that I was able to see my family, only one person a day for an hour. My youngest boy, fourteen, my eldest son, twenty-one and my husband had to take turns.

I missed them terribly, and this was really hard on them as we were seldom apart. Not ever having seen me so, so sick frightened them.

Before I could go home, I had to have some physiotherapy to regain my ability to walk and go up a set of stairs, as this is what I would have to do at home. Finally, after a long and grueling 38 days in the hospital, I was discharged. I was scared and unsure of what to expect once back home. My journey had only begun.

It felt good to be home in my own space with the people I loved and who loved me. Yet I wasn’t used to having to rely on them so heavily. I had always been the caregiver, the nurturer and here they were doing their best to be that for me. I needed my husband’s help

to sponge bathe me, and my fourteen-year-old son to cook meals and tend to me during the day. My sister brought me things like a rail that sat over the toilet so I could get up easier. While this is what I would do for them without a thought, I began to feel like a burden.

I was assigned homecare to tend to my wounds three times a week, which turned into daily visits when I ran into complications.

My wounds were creating havoc and infections. My skin was so broken down under the flange that it wouldn’t last more than a day. I started having constant fecal leakages and none of my nurses knew how to help me because they were not trained in ostomy care. I had yet to change my own bag and flanges but was nowhere near ready.

Months went by and I still had shown no improvement. I was taken off the negative pressure vac in November, not because I was ready but because my ten weeks’ insurance coverage was up and they didn’t want to ask for an extension. They didn’t tell me that of course. This led to further drainage from my open wound that would leak onto the flange and worsen my skin irritations. There was no end in sight.

My mental health was now deteriorating. I became so stressed out about how we were going to be able to afford ostomy supplies on a daily or even on an every other day basis. Having been selfemployed, I had no medical benefits, and my husband’s work benefits do not cover any ostomy supplies. Our province only gives a small annual grant, and it was not going to even come close to covWINTER 2023 OSTOMY CANADA 23

Three years post-surgery, I am getting back out there. Despite everything that I have gone through I’m still out there doing what I love which is being a filmmaker and producing short films in our local community. I happily attend all of my sons’ and husband’s baseball and hockey games. I’ve begun working part time as a senior companion and giving care, as that is who I am.

Stephanie plays a lawyer; on the set of a new short film.

ering what I needed. I couldn’t continue in my line of work due to the risk factors. How was I supposed to start over at this age and deal with a disease I still knew so little about?

I had gotten to the point where I was wishing the surgery hadn’t saved me. Hearing other ostomates and their positive messages only made me feel worse. I hadn’t spent a life of suffering, pain and agony that they spoke of. I was completely blindsided by this. I couldn’t understand why this was happening to me now.

Stress appears to be the most common reason for Crohn’s disease to become active. I had a lot of stress before the attack and then a lot of it afterward. My skin was still not tolerating the appliances and we tried several products. I finally got a follow up appointment, almost one year later, with my GI. I requested that the wound care nurse who tended to me while in hospital, be in attendance to give her opinion on my skin situation. She diagnosed one of the huge wounds as pyoderma and put in an order to have me switched to a homecare that provided an ostomy nurse. That is also when my G.I prescribed Humira for me to try.

There seems to be a shortage of nurses who are trained in ostomy care, because the switch to a different homecare agency made no difference. I was at my wits’ end and was giving up. I couldn’t nor did I want to live out my life like this. It was defining me. It was consuming me. My spirit was breaking. They finally sent me to a clinic where the nurse was a little better trained and still after months of trial and error we concluded that less is not more for me.

At every change I had to stick to my routine of spraying Flovent (an inhaler for asthmatics) on my skin around my ostomy, putting a layer of Cavilon (a skin barrier), followed by a barrier ring, the flange and a bag. This was a step up since I was able to get rid of the barrier 24 OSTOMY CANADA WINTER 2023

sheet I had to use, which is very expensive. This was no slap-it-onand-go-routine for me and never will be.

By following that method, my skin really improved and I was released from homecare in November of 2021. I am now successfully getting seven days’ wear time out of my system and my skin is much better. It sure has made it much easier to accept from a financial perspective. From an emotional perspective, not so much. My self-image, intimacy and even daily grooming have been affected.

Being a plus size woman my whole life, I never was body confident. Add a bag of sh…well you know…to that and a massive scar, making me more disfigured, made me hate my body even more. I was sad for my husband having me like this, but he supports me wholeheartedly and loves me no less, so this was all in my own head.

I told him I now understood why people with a terminal illness

November 2023 - ‘Life After…’ voted Audience Favourite at the 2023 Ottawa Canadian Film Festival ocanfilmfest.ca/archive-ocan23.html#nov8mediarelease

wanted to free their partners. We both cried and he said he wasn’t going anywhere.

I’m not 100% mentally better yet. I fear many things, including foods, and this whole experience has validated my belief that food is poison. I also fear what aging will look like and the cost of supplies then. Who will change my system when my hands shake too much?

Will I get cancer from this? Physically I will always have Crohn’s disease and an ostomy, but for now I am living again, so I remind myself to focus on the present.

Three years post-surgery, I am getting back out there. Despite everything that I have gone through I’m still out there doing what I love which is being a filmmaker and producing short films in our local community. At the time of writing this article, one of my short films is being screened in Ottawa. I have become an actor and will appear in a feature film that will play on Amazon Prime in 2024.

I happily attend all of my sons’ and husband’s baseball and hockey games. I’ve begun working part time as a senior companion and giving care, as that is who I am, living for those who need and love me.

I’m trying my best to show my kids that life knocks us down and we get back up, even if it’s a slow climb. To be independent is good but to also know that it’s just as important to ask for help when you need it. That it’s okay to not be okay and to let others shine their light on

you when you are in the dark.

To any new ostomates out there…I get it. Let yourself go through the emotions. There will be many. Take each day as it comes. Don’t look to the future because we can’t control what that is. Just keep getting up and fighting. You are not alone. We are warriors! We are survivors! n Stephanie lives in Kanata, ON.

Editor’s note – Stephanie’s (Director) short film ‘Life After’ premiered at the 2023 Ottawa Canadian Film Festival in early November and was voted as Audience Favourite Film.

Check out Stephanie’s YouTube channel where films that she writes, directs, acts in and co-edits can be seen. youtube.com/@stephanielalonde794?si=GXIN_ v2a-5MynZEL

WINTER 2023 OSTOMY CANADA 25

old, s r a e y 1 3 ’m I’m Katie, I C olitis. e iv t a r e c l U and I have I’m originally from the UK and in 2016, I moved to China to work and try something new. After almost three years of living there I met my then partner, who was from Ontario. We moved to Hong Kong for a few more years and then in 2021, during the pandemic, we moved to Canada together.

During my time in Asia, I began slowly developing unpleasant symptoms; however, I couldn’t seem to get a definitive diagnosis, even after several colonoscopies.

In February of 2022, living in downtown Toronto, I became very unwell. I was experiencing excruciating pain in my lower abdomen, so I headed to the emergency room. After just a CT scan and some blood tests, I was diagnosed with acute ulcerative colitis. I was told that my colon could have perforated had I not been admitted to the hospital at that time. The next morning, a stoma nurse came to see me, and told me it was likely I would need to have ostomy surgery. Having never heard those words before, I just shrugged it off. She asked me to stand up and then she placed a dot on my abdomen with a Sharpie and told me, “This is where your stoma will be placed IF you need surgery.”

Over the next three weeks, my health rapidly started to deteriorate. Doctors had told me that my best shot at any quality of life moving forward was to have a subtotal colectomy and an ileostomy.

I couldn’t believe it had come down to this. It didn’t feel real.

I remember the day I signed off on the surgery. My partner at the time came to see me almost every day, and that day I remember asking him to help me shower. I had lost so much weight and felt so weak. I looked down to see ‘the dot’ that the stoma nurse drew on my abdomen to the right of my belly button. I had been ignoring it for weeks, but now I knew that in a few days’ time, my stoma would be there. My partner held me while I cried as that reality set in.

Over that weekend, I had a severe reaction to one of the biologics I was trialling, and my liver began to fail. The doctors were left with no choice but to move me to the top of the emergency surgery list. After the surgery was done, I woke up early, around three am 26 OSTOMY CANADA WINTER 2023

and braced myself to pull back the covers and look at my brandnew stoma. There it was, in a clear Coloplast ostomy bag, my new ileostomy, peeping through.

My mum, terrified of flying, got on a flight alone for the first time in 15 years to be by my side post-surgery, as I adapted to this new normal. She walked from my downtown apartment to the hospital every day to be by my side, and she was there for my discharge, to help transition me to life back at home. After five weeks in the hospital, there was no better feeling than being in my own bed and being with my mum.

Throughout the following weeks, I tried a bunch of ileostomy products but fell in love with the SenSura® Mio line from Coloplast.

I also use their Brava® products like the adhesive removal spray and the powder. I use the protective rings religiously; I can’t do a bag change without them! The Coloplast Care team is also always available on the other end of the phone line to offer amazing advice, and even in all the other countries I’ve travelled to, as well.

While I was healing, I enjoyed connecting with fellow ostomates and learning tips and tricks for things like bag changes and avoiding leaks. I made my own Instagram (@ostokate) and TikTok (@katiecoop) channels and quickly made a lot of online friendships.

Now, it’s just been over a year, and I can confidently say I’m doing a lot better. Of course, life will never be exactly the same, however I have a lot more freedom and confidence because of my ostomy. When my ulcerative colitis was at its worst, I was chained to the bathroom for hours and was in a lot of pain. I didn’t realize how much freedom my ostomy would give me, and it’s definitely the best decision I could have made. n This article was submitted by Coloplast as part of their Diamond level sponsorship support of the 2023 Step Up for Ostomy Program. @ostokate

@katiecoop

Ostomy Guides to Eating and Living Well Paula

User | Ostomy Care

Download our new guide to understand the importance of having a balanced diet after your ostomy surgery. You will find information on hydration, how to effectively manage challenges such as pancaking, odour, blockages and get lifestyle tips.

To instantly download a digital copy of the eBook please scan the QR code on your smartphone or visit: visit.coloplast.ca/EatingLivingWell

Paula has received compensation from Coloplast to share her information. Each person’s situation is unique so your experience may not be the same. Information from Coloplast is for educational purposes only. It is not intended to substitute for professional medical advice and should not be interpreted to contain treatment recommendations. You should rely on the healthcare professional who knows your individual history for personal medical advice and diagnosis.

Coloplast Canada, 2030 Bristol Circle, Suite 117 Oakville, ON L6H 0H2 www.coloplast.ca PM-29233 The Coloplast logo is a registered trademark of Coloplast A/S. © 2023-11 All rights reserved Coloplast A/S, 3050 Humlebaek, Denmark

Condoléances Condolences Au nom du conseil d’administration et de tous nos bénévoles à travers le Canada, nous transmettons nos condoléances à la famille Lapointe.

Jean-Pierre a fait partie intégrante de la fondation de Friends of Ostomates Worldwide (Canada). Jean-Pierre a été membre du conseil d’administration de longue date et il nous manquera. Le dévouement de Jean-Pierre au service de la communauté des stomisés du monde entier perdure.

On behalf of the Board of Directors and all our volunteers across Canada, we convey our condolences to the Lapointe family.

Jean-Pierre was an integral part of the founding of Friends of Ostomates Worldwide (Canada). Jean-Pierre was a long time Board member and will be missed. Jean-Pierre’s dedication of service to the ostomy community worldwide lives on.

Rosemary was a dedicated Board Member of Friends of Ostomates Worldwide (Canada) for ten plus years.

She served as our Treasurer and her impeccable work in that capacity kept us on the straight and narrow.

Rosemary worked tirelessly making sure that our books and records were always up to date and accurate.

Rosemary touched so many lives in the very best way. I’m grateful I got the chance to know her as both a colleague and a friend.

You will be glad to know that Rosemary’s dedication of service to the ostomy community worldwide lives on.

On behalf of the Board of Directors and all our volunteers across Canada, we convey our condolences to the Gaffray Family.

Cordialement, Sincerely, Lorne Aronson, President, Friends of Ostomates Worldwide

Giving the Gift of Dignity!

Yes, I would like to improve the quality of life of ostomates overseas by donating surplus ostomy supplies!

We accept flanges, appliances (one and two piece) skin barriers, powders, pastes. We do not accept adult diapers, medications, and liquids of any kind.

Please see our website at www.fowc.ca for product donation criteria or email info@fowc.ca

28 OSTOMY CANADA WINTER 2023

This newsletter from Sally (founder of KOA) recognizes FOWC and the importance of our support. Thanks to all the volunteers, product donors, and monetary contributions. All the hard work FOWC does shows we make a difference in people’s lives. ~Lorne Aronson, President, FOW(C)

The Kenya Ostomy Association (KOA) is a dedicated non-profit organization committed to improving the lives of ostomates across Kenya. Our mission revolves around offering crucial psychosocial support, ensuring the direct provision of essential ostomy care products, and disseminating vital information. Ostomates often face numerous physical, financial and emotional challenges in their daily lives.

The donated ostomy supplies from the Friends of Ostomates Worldwide-Canada facilitates KOA to work tirelessly in assisting needy ostomates who live in Kenya and the rest of East Africa. This support enables needy ostomates to lead dignified lives.

Living with an ostomy can be a daunting experience, often accompanied by physical, financial and emotional distress, like Benjamin who was involved in a serious road accident and after a

Left: A grateful patient.

Above: A diaper being held on by a string, to collect fecal matter

colostomy surgery was discharged with tissue paper taped over the open stoma. Receiving the needed supplies from KOA, enabled him to live a dignified life. Five-year-old Nathan was born with Spina Bifida, which resulted in ileostomy surgery. Since the impoverished family could not afford quality appliances, diapers were tied around his abdomen. With the support of KOA, they now have access to well fitting pediatric ileostomy bags. n

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Ostomy Supplies Replace WD-40 for Fishing!

By Patricia Othen

To sum up my life quickly, I was born in Red Deer, Alberta and was brought up on a farm just east of the city in the Balmoral district. In 1968, I met a Welshman who was working on his Fishing one of the many back country water ways PhD in Chemistry at the University of Alberta.

I married that Welshman and 47 years later, in September 2016, in Halifax Nova Scotia he died of lung cancer. That was a huge change and a new challenge in my life that I was prepared to take on, but in October 2016 a routine stool test discovered blood in my stool.

“Oh!” I surmised it was just an irritated hemorrhoid from all of the sitting I had done over the five months of my husband’s illness. That turned out to be wishful thinking and by April 2017, one year after my husband’s diagnosis, I was diagnosed with phase three colo-rectal cancer. In September 2017 on the anniversary of my husband’s death, the surgeon and I decided that I would have abdominoperiPat wears colourful neal resection (APR) surgery for a permanent colostomy. My surgery cotton bag covers Enjoying life at Peggy’s Cove took place on October 29th, 2017. My Halloween costume would be an ostomy bag! After a 12-week recovery period from the surgery and infection, it was decided that I should go to oncology. A friend lies, which has increased our family size, our family commitments and I made a reluctant trip to see the oncologist on Christmas Eve. and filled our lives with more love and joy.

However, there was good news. Of the 21 lymph nodes removed, With a new partner at my side and our extended family growthey had only found a very small cancer cell in one! lymph node. ing, we have enjoyed many hours taking new-comers from job to The oncologist said if I twisted his arm, he would give me chemo job or filling out more government forms than one ever knew existor radiation, but I still had a 10% chance of the cancer returning. ed. On a personal level, we have enjoyed socializing and discovering A five-year surveillance plan was good enough for me. I went home scenic areas of Nova Scotia, Newfoundland and Alberta. Here in and celebrated Christmas with my chosen family. I slowly got myself Nova Scotia we often go canoeing and/or fishing, if there is enough up and going again and I have never looked back, despite several snow we can snowshoe, and with enough ice we can go ice fishing. scares from the yearly CT Scans and the MRIs. This past October In recent years, we have found that winter sports are a bigger chalwas the last of my five year follow-ups and I am healthy. lenge in Nova Scotia than being an ostomate is! We did some truck It has been an interesting journey learning how to deal with tent-camping and then found a small piece of land that we cleared both my widowhood and a permanent (end) colostomy. Over these ourselves and we set up a cottage site, with a creek running through past seven years my life and activities have changed a great deal. But at the bottom of the garden. I also took up bowling again after a 50 it is not all because of the colostomy. First I adopted a cat as a rodent year break and I enjoy playing many games of cribbage. I consider control officer for my house. Then I took in a refugee claimant fammyself a Jill-of-all-Trades and a Mistress of None, but I love to try ily in 2017 to live with me as I have no children of my own. That whatever the next challenge is, within reason! family, who are now permanent residents of Canada, are still in my I have had a few funny and potentially embarrassing incidents home and we have become family. Along the way we adopted two with my colostomy appliance as I have learned the way of life with dogs. My family continued to grow when I embraced a new partner a colostomy. First, I named my stoma ‘Susie 2’, a joke between who has three children, six grandchildren and two great grandchilmy mother and me. As a child I had an imaginary friend called dren. This past year he and I have taken in three Ukrainian famiSusie and my mother would always ask “Who is Susie?”. Now she 30 OSTOMY CANADA WINTER 2023

Coloplast Lubricating knows! The real Susie talks a lot and family and came back with a bucket of bleach, water and a Deodorant to the rescue. friends are now used to her interruptions during mop and then left me to clean up my own mess. conversations or meal times. I wear a two-piece At the time it was horrifying, but now it is just appliance and have adapted my clothing so that funny, and we have a good laugh about it.

I wear the bag on the outside of clothing (jeans This past April we walked a trail into a local mostly) with colourful cotton bag covers. At the lake where we have a rowboat chained and pad most inconvenient times, the appliance decides locked to a tree. When we got there, someone to come apart. I somehow managed to rip the had overturned the boat, and when they couldn’t bag off the base and had it land in the wood pile get the lock and chain off they had filled the lock while we were clearing our cottage site. While helping a friend in a with sticks and mud. We had to bail the rain-water out of the boat wheelchair through a narrow gap at the hospital, I caught the hanand after frustratingly trying to get the lock open, I remembered dle of the chair on my bag and it hit the floor as we passed through my emergency bag that was in my pocket that contained a sachet the gap. Fortunately, as a colostomate it was not too big of a mess. of Coloplast lubricant deodorant. We tried it, and it successfully While bowling one night, just the way I bent down to throw the released the lock. After all the sachet does say “Multi-lubricating ball and then stand up, the pocket in my jeans caught the bag and effect”. I suspect Coloplast had not thought about lubricating rusty tugged it off. I have since decided to wear much looser sports pants hinges and locks with their product! I love the product for my bags with the bag tucked inside for bowling! People are usually not put and the multi-lubricating effect for other uses! off by these things as long as I can laugh it off. It is often a chance After that long winded summary of my life I have to say loud to explain what an ostomy is and I am never shy to explain the bag and clear that I love my new life and Susie and I have gotten on just or the reason why I have it. The worst mess was the night I took a fine with all the new experiences we have encountered over the last purgative for an upcoming colonoscopy. Since I wear a closed bag, it few years. n filled very quickly and while trying to change the bag, Susie began to spray-paint the bathroom with ‘Poop!’. When she was quiet for Patricia lives in, Dartmouth, Nova Scotia and she is the a few minutes I quickly put on a drainable bag and started to clean Recording Secretary for Ostomy Halifax Society the bathroom. My partner came in and left just about as fast and

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Dancing Through Change

by Olivia LeBlanc

Dance is my life. You can’t spend 35 hours a week doing something you love without giving it that big of a title. A simple “tell me about yourself” question would be answered with “Hi, my name is Olivia and I dance”. The only thing I had doubts about when I was told I would need an ostomy, was the impact it would have on my life (dancing).

My symptoms started in May of 2021, just before my 15th birthday. Many walk-in clinic and hospital visits later, I was finally diagnosed with ulcerative colitis. It wasn’t until the Fall of 2022, during the first month of 11th grade, when my symptoms worsened, and I was admitted to my local children’s hospital. What I thought would be a couple of days of intensive treatment quickly turned into more than a month of sitting and waiting for something to help me to feel better. The nurses, doctors, and medical students were all so welcoming and caring. The child life services staff were great too.

They offered me daily activities to try and help keep me busy, but I was never in the mood. Sitting in a hospital room for 15 hours a day, only to wake up the next day and do it all over again, was tough physically and mentally.

Before too long, I had exhausted all new medication and treatment options. That’s when the surgeons started knocking on my door. When I was first diagnosed in 2021, my medical team had explained all the options to me, but I never thought I’d exhaust them all, and certainly not so quickly! Accepting that surgery was the best and safest option was difficult; especially because I knew it meant my body would never quite be the same as it was pre-sickness. My dad and I watched videos and read all about ileostomies and colostomies, but it never gave me a clear picture of what I would end up with.

Surgery day went by fast. My surgeon did a subtotal colectomy with end ileostomy. For me it was like having a five-second nap and then waking up with a ‘new body part’ and there were instructions on how to care for it. A few days’ post-op, the ostomy nurses came in and explained how to clean my stoma and skin, how to replace the appliance, and how to care for my ostomy. They said that I wouldn’t always be able to make it perfect at every change. Don’t you worry, I found a way most of the time; they didn’t know me!

32 OSTOMY CANADA WINTER 2023

Even though I went through all that I did, it didn’t change me. Everything in my life is the same as it was before, except my body is healthier and I feel a lot better.

Two weeks after surgery, I went back to high school. It didn’t take me long to catch up on the schoolwork I had missed, but for dance it did. I wasn’t allowed to engage in any intense physical activity for at least six weeks. While waiting for those six weeks to pass, I introduced my body back to dance by going to the younger kids’ classes, helping the dance teachers and doing only what my body would safely allow. It gave me an opportunity to reconnect with my dance friends and gave me the time to student teach; something I had done a lot of prior to becoming unwell. At the six week and one day mark I was back in my regular dance class. I wasn’t as flexible nor as strong as I was before, but I was back…and ready to retrain my body.

I attended the first dance competition of the season with everyone from the studio, cheering them on from the sidelines. I never once felt left out by anyone; I was always a part of the team. Every week after that, I did more and more in class. I could feel my body responding. I was stretching further, jumping higher, turning faster.

Even though I went through all that I did, it didn’t change me.

Everything in my life is the same as it was before, except my body is healthier and I feel a lot better. No one treats me differently, no one looks at me differently (or at least the people who matter don’t), and all those pre-surgery doubts I had, feel like tiny whispers now.

I have not a regret in the world because of the quality of life I now have. n

Olivia LeBlanc lives in Halifax, Nova Scotia

MOVITA BEAUCOUP DANCE PHOTOGRAPHY

Vancouver Ostomy Association: Norman Jensen, Debra Rooney, Arden Townshend, and Daljit

34 OSTOMY CANADA WINTER 2023

2023 Step Up For Ostomy is a national fundraising program in support of Ostomy Awareness. Ostomy Canada Society’s vision is to be Canada’s voice for people living with an ostomy. The financial support raised during Canada’s largest annual ostomy awareness event supports people with an ostomy and their families, helping them live life to the fullest through support, education, collaboration, and advocacy.

STEP UP FOR OSTOMY FUNDRAISING HIGHLIGHTS Calgary Ostomy Society – Calgary - held its third annual Step Up

S & C CURRIE PHOTOGRAPHY

For Ostomy event at the Inglewood Community Hall on September 16, 2023. On a gorgeous Fall day with about 60 people in attendance, in addition to the ostomy awareness walk at Inglewood Bird Sanctuary, we offered a seated yoga session for those with mobility issues. The walk / yoga was followed by a BBQ. Door prizes were happily won. An ostomy photoshoot with Sean Currie wound up the event. You will soon be able to see those lovely new faces on our website and social media. Our Ostomy Expo featured several ostomy vendors and manufacturers which allowed guests to be hands on with products. We would like to thank all of our event sponsors for participating, providing door prizes and bringing samples. A huge thank you goes out to Craig Bean of CB Medical for sponsoring the hall rental. To those who donated and assisted with fundraising, we can’t thank you enough! This year,

we raised $3355! To date, Ostomy Canada Society has raised nearly half of its goal of $100,000. Special thanks to Jaadaas Jagwaa, (Tiffany Shorson’s sister), who hosted the yoga session and read a Treaty 7 Land Acknowledgement with this inspiring message for ostomates: “The morning of the event, I was building up my energy for the day and noticed that the bumble bee was on my heart. This animal guide approached me to empower the Ostomy Society and event participants. The bumble bee is a well-known survivor who has encountered extinction many times over thousands of years. Their survival nourishes us, just as ostomy survivors nourish and enable the world through the unique lens that their collective health issues have given them. Like the bumble bee, ostomy survivors have much knowledge and medicine to share with the world to create a better place. The bee’s stripes represent the many layers it has taken to survive and live with confidence. Like the bumble bee, ostomates are uplifted by their community and its resources, which is why events like Step Up for Ostomy are so important. It felt right as a warrior to share and gift this powerful animal with the ostomy community.”

Ostomy awareness is an important matter, and though the big day may happen once a year, we must continue taking action to eliminate the stigma and raise awareness and funds to support Ostomy Canada’s programming. (Excerpts from Calgary Ostomy Society Simply Ostomy newsletter.)

WINTER 2023 OSTOMY CANADA 35

Sheryl Walker and Deb Carpentier

Regina Ostomy Chapter – Regina - The 2023 Step Up campaign was once again a success. The

morning on September 23rd started out a bit gloomy weather wise, but the rain held off and we got our walk in at Wascana Park without anyone getting wet. About a dozen people stayed back and had a fun half hour of chair yoga with Alice Samkoe. The crew who stayed behind then did their magic to ensure there was a great lunch for us when we returned from the walk. We had about 35 people out and we all really enjoyed seeing everyone and having a good catch up. It was great to have our sponsors, Jolly’s Medical & Athletic Supplies and Medical1 Physician & Health care join us. And a thank you to our NSWOCs who joined us and got everyone registered. An event like this wouldn’t be the same without them as they’re such an integral part of our group. After all was said and done we had raised a lot of money and hopefully raised awareness as well. We had very generous individual and company donors. If you look online you’d see we had $2000 online donations, $640 that Rosalie Tuchscherer raised in her circle and $3555 with cheques and cash that morning.

Regina was the top fundraising group, with a whopping $6200 total. A very big and heartfelt thank you to our volunteers, NSWOCs and donors, from Regina and other parts of Saskatchewan. It’s amazing what we can accomplish as a community.

Vancouver Ostomy Association – Vancouver - We were expect-

ing a rainy walk but Mother Nature was kind to us and the sun even came out. Just as we were wrapping up, the rains started falling from the sky. It was a very successful event. I believe we would have had more people join us but they were expecting that rain too.

LaFarge Lake is where we usually do this annual walk as it is such a lovely place. Tara, of Lifecare Ostomy was her usual amazing host of this event. A good time was had by all. Meeting new ostomates and seeing familiar faces was so special. We collected $230 in our collection jar for Ostomy Canada.

Norman Jensen, Debra Rooney, Arden Townshend, and Daljit

36 OSTOMY CANADA WINTER 2023

Moncton & District Ostomy Association – Moncton - Our fundraising event was held

on Saturday September 23 with a beautiful sunny day. Our organizing committee worked hard to get funding for T-shirts (sponsored by Canadian Tire and Primerica Investors). Gail Colpitts was our team captain and we had Timbits, water, and cupcakes. Guy worked hard to have media coverage and Max 103.9 (Tosh) was there and did interviews which were aired live. We had 20 or more people in attendance and were present at the front of Moncton City Hall. Our goal was to raise funds for Step Up and also to raise awareness with our politicians to hopefully get coverage for ostomy products in New Brunswick. Harrisville Pharmacy in Moncton sponsored our fundraiser and we are grateful to them and all those who supported us. We raised $2660.

Kevin Arenburg, Joan Peddle, Alfred Thebeau

Chapters and Peer Support Groups also had options to support the campaign, such as online fundraising via JustGiving or becoming a national sponsor instead of a live event. We are grateful to the following groups for supporting this important cause: Halifax Ostomy Society created a fundraising team via Just Giving, which raised $4,660. South West Nova Scotia Ostomy Peer Support Group became a Silver Sponsor. Ottawa Ostomy Support Group raised $200.

Special thanks go to our top ten fundraisers this year: 1. B ill Power was the #1 fundraiser, bringing in $4,360 for the Ostomy Halifax Team.

2. Heather Cameron from Medicine Hat, AB. with Team Crohn-O Tigger stepped up to raise $3,275.

3. Yaser Nadeem, OCS webmaster, raised $2001.

4. Tiffany Shorson, OCS marketing volunteer, raised $1225 for Team Calgary Ostomy.

5. G ail Colpitts raised $ 1,000 for Team Strollin’ Rosebuds in Moncton, NB. 6. Joan Peddle, OCS director, raised $850 for the Strollin’ Rosebuds.

Guy Hebert, Christina Tessier: Harrisville Pharmacy rep

7. Esther Halton raised $750 for Team Calgary Ostomy.

8. Rosalie Tuchscherer stepped up to raise $640.

9. Denise Nicholson raised $550 for Team Strollin’ Rosebuds 10. L isa Gausman, Ostomy Canada Magazine editor, raised $500 for Team Calgary Ostomy.

Ostomy Canada also had many National Sponsors this year, raising $15,000. Special thanks to our Diamond Sponsors: • Hollister • Wellwise by Shoppers • Coloplast The Step Up For Ostomy campaign will be open until March 30.

To date, we have reached nearly half of our target goal. Please continue to step up and donate.

Watch for the SAVE THE DATE in Summer 2024 Connects.

www.ostomycanada.ca/step-up-for-ostomy www.stepupforostomy.ca www.justgiving.com/campaign/step-up-for-ostomy-2023

WINTER 2023 OSTOMY CANADA 37

Jude Ruest

CONGRÈS ANNUEL 2023 Par un beau samedi de septembre plus de 100 personnes ont répondu à l’invitation de l’Association des personnes stomisées du Saguenay—Lac-St-Jean (APS) pour assister au 41e congrès annuel de notre Association. Toutes les personnes étaient enthousiastes et heureuses de se rencontrer à nouveau en présence de personnes qui comprennent notre façon de vivre.

Notre thème cette année était : * TOUJOURS PRESENTS*.

Un thème qui en dit long sur notre expérience de vie. Il ne s’agit que de penser à notre centenaire Mme Candide Simard, toujours si présente malgré tout…

L’ouverture du congrès fut faite conjointement par Madame Suzie Simard, présidente et M. Alain Lebrun, vice-président. Ils nous souhaitent la bienvenue et nous tracent un portrait de la journée.

Nous avons eu le plaisir d’accueillir trois infirmières-stomothérapeute qui ont reçu les personnes stomisées présentant un problème en consultations privées pendant toute la journée et ce, sans oublier les fabricants d’appareillage et fournisseurs de services qui ont présenté leurs produits et répondu aux questions des participants.

Madame Danielle Gilbert a fait sa conférence intitulée : *Vivre avec une stomie* et M. Jude Ruest nous a fait part des dernières statistiques concernant le nombre de personnes stomisées dans plusieurs pays incluant le Canada, la répartition dans les 16 régions du Québec, la classification par groupe d’âge et le nombre de chirurgies annuelles conduisant à une stomie selon la RAMQ. L’assemblée générale annuelle a eu lieu et deux nouveaux membres feront désormais partie du conseil d’administration soient, Madame Nadia Pelletier et M. Jean-Claude Dubois. Bienvenue à vous deux et merci pour votre engagement.

Nos membres ont ensuite été conviés à un cocktail de bienvenue suivi d’un dîner et d’une large distribution de cadeaux dans un contexte de bonheur.

Rédaction par madame Martine Gagnon, secrétaire et Montage par madame Christiane Basque, webmestre de l’AQPS. La journée se termine en se promettant de se revoir l’an prochain pour le 42e congrès annuel. n 38 OSTOMY CANADA WINTER 2023

Mme Candide Simard

André Confection

2023 ANNUAL CONFERENCE On a beautiful Saturday in September, more than 100 people responded to the invitation of l’Association des personnes stomisées du Saguenay-Lac-St-Jean (APS) to attend the 41st annual conference of our Association. Everyone was excited and happy to meet again in the presence of people who understand our way of life.

Our theme this year was, ALWAYS THERE. This is a theme that says a lot about our life experience. It’s just a matter of thinking of our centenarian, Mrs. Candide Simard, who is still present despite everything.

The conference was jointly opened by Mrs. Suzie Simard, President and Mr. Alain Lebrun, Vice-President. They welcomed us and gave us an outline of the day to come.

We had the pleasure of welcoming three ET nurses who offered private consultations throughout the day for ostomy patients asking questions about problems. The device manufacturers and service providers presented their products and answered questions from participants.

Mrs. Danielle Gilbert gave her presentation entitled: ‘Living with an Ostomy’ and Mr. Jude Ruest shared the latest statistics regarding the number of ostomy patients in several countries including Canada, the distribution in the 16 regions of Quebec, the classification by age group and the number of annual surgical procedures leading to an ostomy according to the RAMQ. The Annual General Meeting was held and two new members will now be part of the Board of Directors, Mrs. Nadia Pelletier and Mr. Jean-Claude Dubois. Welcome to both of you and thank you for your commitment.

Our members were then invited to a welcome cocktail followed by a dinner and a large distribution of gifts in an atmosphere of happiness. The day ended with a promise to meet again next year for the 42nd Annual Conference. n Written by Mrs. Martine Gagnon, secretary and edited by Mrs. Christiane Basque, webmaster of the AQPS.

OUR MEMBERS WIN AWARDS

NSWOC RECOGNITION AWARD RECIPIENT

Lauren Wolfe

Lauren Wolfe goes above and beyond what is expected of an NSWOC. I know from having had several NSWOC’s the difference between someone doing their job and someone who is fully committed and caring.

Lauren has helped many patients according to their different needs, and she does a lot of research on her own time.

We are very lucky to have Laure. The ostomy world of BC’s Lower Mainland would sadly miss her presence. Lauren faithfully volunteers her time by participating in meetings and social events.

She is a regular contributor to HighLife, Vancouver United Ostomy Association’s newsletter. Lauren has organized workshops with ostomy product companies, and she does a tremendous job!

She will be a panel speaker about ostomy care at an upcoming symposium for Crohn’s Colitis of Canada. She brings prizes to our yearly Christmas party to give away not only from her work but from her personal funds.

Lauren is a most deserving recipient of the NSWOC Recognition Award for her support of persons with ostomies in British Columbia.

The Vancouver United Ostomy Association is honoured to nominate her for this prestigious award.

CHAIR’S AWARD RECIPIENT

Deb Carpentier

The Chair’s Award states that “the Award can be bestowed upon any member at any level within the organization or an associate whom the Chair of the Board (in this case Ann Durkee-MacIsaac) deems to have demonstrated outstanding voluntary services on behalf of the organization.”

This year there have been many incredible, hardworking, and compassionate people who I’ve had the pleasure of knowing and working with. However, one person stood out for their remarkable

Ann Durkee-MacIsaac presents the award to Deb Carpentier

practice of volunteering their time and talents for the mission of Ostomy Canada. This person has been an anchor for their work and volunteerism within many sectors of our organization. They have become an example of remarkable skills in management, development, innovation, and social companionship with associates. It gives me pleasure to tell you of her many contributions to the communities in which she belongs, especially Ostomy Canada Society.

It gives me great pleasure to present the Chair’s Award to Debra Carpentier, my friend and colleague. Deb was born in Manitoba but grew up and went to school in Regina. In 1972 she moved to Calgary, where she lived for 13 years, worked with CBC television and it was there where she had her ostomy surgery. It was in 1985 when she moved back to Regina, married and worked in various jobs and once again worked with CBC in television and radio operations for over 22 years.

It was thirty-seven years ago when she married her husband and they have had a journey of love, commitment, travel, and a lot of fun. In her only daughter’s words, “thanks for being the best parents, role models and partners to each other.” Her daughter Lindsay and her husband gave them the best gift of all, three beautiful granddaughters. Deb enjoys spending time with them as well as baking, throwing parties for them, and hugging each of them as often as she can.

Deb was a visitor with the Calgary Ostomy Society in the early 80’s and when she moved to Regina she went on to become an active volunteer with the group. Presently she is the editor of the Regina Newsletter, works with their website and is Vice-President of Regina Ostomy.

Deb has been an advocate for people living with an ostomy as an Ostomy Canada Society member for many years. She is in her WINTER 2023 OSTOMY CANADA 39

OUR MEMBERS WIN AWARDS

third term as the Regional Administrator for the Prairie Region and has sat on the Board of Ostomy Canada as a Director since 2016. She has been instrumental in updating the Visitor Program, involved in rewriting many of the sections of the program manual and getting it out to the ostomy groups across the country. She was also part of the website redesign committee as well as being involved in developing the online Visitor Training program. Deb was part of the executive committee and when working is compassionate, knowledgeable, and valuable. She is a model volunteer and is always committed to the task. She is a kind and caring person both within her own community and the ostomy world.

MAPLE LEAF AWARD RECIPIENT

Ruth Kenney

Joan Peddle presents the award to Ruth Kenney

For more than 50 years, Ruth has been helping Canadians living with an ostomy and their families. Ruth helped to establish the national visitor training program. She is a founder of Ostomy Halifax and has helped start chapters and satellite groups within the Atlantic region. Ruth was the original ostomy nurse in Nova Scotia. Before there was a visitor training program, Ruth would help ostomates in the hospital as an ET nurse as well as outside of work hours. Ruth has contributed to Ostomy Halifax in practically every way possible, including before it was even named that. She helped found its predecessor organization in 1973 and was its second president from 1977-78. Ruth served as a board member of the national organization, and she was a board member of Friends of Ostomates Worldwide (Canada) FOWC. She has collected ostomy supplies locally for many years so that they could be distributed to people around the world who otherwise may go without having their basic human needs met.

In 1969, while Ruth was an RN, she underwent ostomy surgery after being diagnosed with ulcerative colitis. She planned the first Maritime Regional Ostomy Conference in 1978, attracting 200 participants from Quebec and the four Atlantic Provinces. In 1979 Ruth paid her own way to attend an intense six-week training program in enterostomal therapy education at Tucson Medical Center because she wanted to help current and future patients undergoing ostomy surgery. At the time she was the only nurse in Nova Scotia with such training. In 1984, with the support of Ostomy Halifax, Ruth led the charge to have the province fund the first full-time Enterostomal Therapist nurse (ET) at the VG Hospital in Halifax.

This work paved the way for more ET hires in Nova Scotia hospitals in the following years. In 1993, Ruth became the first recipient of the United Ostomy Association Enterostomal Therapist of the Year Award. At the time of the award there were over 200 chapters of the association in Canada and the United States. That year, Ruth received the City of Dartmouth Volunteer of the Year award. In 2002, she was named Canadian Enterostomal Therapist of the Year.

In all of the years between then and now Ruth remained active in the chapter as an active member of the business team, arranging program speakers, liaising with the NSWOC community, supporting FOWC, advocating for ostomates, participating in fundraisers, and helping anyone who would ask. It would be hard for me to imagine anyone more deserving of Ostomy Canada’s highest award than Ruth Kenney. Ruth continuously contributes to Ostomy Canada’s vision of helping those who have undergone ostomy surgery to live life to the fullest. In Halifax, Ruth understood the importance of ‘support’ and would encourage new ostomates to attend meetings where she happily answered questions. She often went well beyond the call of duty.

In 2013 Ostomy Halifax Society acknowledged Ruth’s enormous contributions with its highest honour, the Burleigh Wile Award. Now in her 80s, Ruth remains the conscience and soul of Ostomy Halifax and is a fervent advocate and supporter of all people who have an ostomy and their support networks. She remains a fixture at our monthly member meetings and continues to chair our programming committee.

40 OSTOMY CANADA WINTER 2023

NSWOCC PRESIDENT’S RECIPIENT

Joan Peddle

We are pleased to announce that the 2023 recipient of the NSWOCC President’s Award is Joan Peddle, RN, BN, NSWOC, WOCC(C), CCHN(C) of New Brunswick!

The NSWOCC President’s award for excellence in Wound, Ostomy and Continence Nursing is awarded annually to a NSWOCC member in recognition of their achievement towards nursing leadership in the specialty of wound, ostomy and continence and advocates for the highest quality of nursing to individuals with challenges in wound, ostomy and continence.

The purpose of this award is to provide annual recognition of a NSWOCC nurse or team of Nurses Specialized in Wound, Ostomy and Continence who made an outstanding contribution to the mission, vision and values of the NSWOCC through:

Marcia Leard and Joan Peddle

• the advancement of the NSWOC nursing specialty • the demonstration of exceptional nursing leadership in the NSWOC specialty • contributions to the NSWOCC organization Congratulations Joan on this amazing achievement!

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From “With Little Means”, a short film was born,“STUCK”

by Raimo Strangis

As some readers may know, in 2021 my novel, Executive Director of OCS. From our first “With Little Means”, was featured in the winconversation, John felt a strong connection ter edition of Ostomy Canada magazine. Since to the story and was excited to get involved. then, some exciting things have transpired. In Thus, a short film was born, “Stuck”. the book, I tell a story, my story, of an aspirThe film captures a pivotal moment in ing musician who gave up on his dreams after time. Rai, a musician who just had ostomy suffering from severe ulcerative colitis and evensurgery, is isolating at home struggling to tually needing ostomy surgery. Giving up on come to terms with his new reality. Haunted music was the biggest regret of my life and I by his deepest fears, he’s given up on his music vowed to help spread a positive awareness surcareer. Enter Isla, his eccentric ex-bandmate. rounding ostomy surgery. The book fell into the She’s there because she desperately needs him hands of actor/film producer Micheal Pillarella. to play a show tonight, but also because she He was moved by the story and knew it had Executive Producer / Author Raimo Strangis, cares. The conversation escalates, and Rai Actor Michael Pillarella potential to make an inspiring film. Together, says things he wishes he hadn’t, pushing Isla we began working on a script, making sure we away. He’s scared to get back on stage, but hit on our message to live life to the fullest. We knew that making Isla has shown him that he has people who support him and want an honest, real, and emotional short film was the best way to get into him to play again. After a moment of reflection, Rai grabs his guitar film festivals which would give us our largest reach. and begins to play for the first time in a long time. Will he play the First, we needed a great director, Dan Abramovici. Michael had show tonight? We don’t know. But at least he’s picked up the guitar always been a fan of Dan’s films and knew he would be the perfect again, his first step to living life to the fullest. person to bring our story to life. Dan is an award-winning director/ actor and his films have been featured in film festivals around the Trailor intro - Inspired by the book, “With Little Means”, and the world. Once Dan read the script and worked his magic, a compelreal life story of Raimo Stangis, the short film “Stuck” is about Rai’s ling screenplay was created. painful journey with severe ulcerative colitis, while being an upNext, we needed a film production company to put it all togethand-coming rock star in the Toronto music scene. “Stuck” not only er, Stagg Forrest Films. With a combined passion for storytelling tells a compelling story, but also raises awareness for the ostomy and a wealth of experience, Myrthin Stagg and Kate Forrest were community and thus helps to end stigma associated with ostomy committed to creating an engaging and thought-provoking film surgery; a procedure that helps thousands of Canadians every year. that resonated with audiences worldwide. They were a pleasure to It is a gritty, raw and emotional film about Rai’s changing relationwork with and did all the heavy lifting to bring our story to life. ship with his body. What happens in that dream-like journey is what Then, we needed a cast of talented actors. Once Michael com“Stuck” is all about, gaining knowledge of living with an ostomy and mitted to the lead role of Rai, and actress Karen Knox came onboard living life to the fullest. n to play the eccentric bandmate Isla, we knew we had the right actors to deliver a compelling performance.

Follow this link on the Ostomy Canada website to view the trailer Finally, we felt it was important to have the support of an orgafor the film: nization that shared our vision and believed in the cause. Being a member of an ostomy support group, Barrie branch, I knew who I vimeo.com/864662366 wanted to contact first: John Hartman, recently retired and former 42 OSTOMY CANADA WINTER 2023

Top Left: Cinematographer Matt Bendo, Actor Michael Pillarella, Top Right: Director, Dan Abramovici speaks to Actor, Michael Pillarella, Top Right (inset): Actress Karen Knox, Above: Producers Kate Forrest and Myrthin Stagg with the cast and crew of “Stuck” WINTER 2023 OSTOMY CANADA 43

DON’T LET YOUR OSTOMY GET IN THE WAY OF

Living the Life

You Know You Can Have – MY FAP DIAGNOSIS

by Lauren Thomas

Life is already full of challenges, ups and downs and so many unknowns. Being a young adult, living with illnesses and an ostomy can make those challenges and unknowns even more difficult.

For me, it all started when I was six years old and diagnosed with familial adenomatous polyposis (FAP) through an eye exam and confirmed with blood work. FAP is a rare condition that is inherited and affects the gastrointestinal tract. Individuals with FAP develop polyps inside their colon or rectum which can become cancerous if left untreated. FAP can also result in other conditions like desmoid tumours (non-cancerous growths) and CHRPES (freckle-like spots in the back of the eyes).

Once I turned 13, I started going for yearly colonoscopies.

Soon after I turned 18, my doctor told me that my colon was fully engulfed with polyps and that I needed surgery sooner rather than later. This news caught me off guard (like it would for anyone) and although I knew surgery was going to be in the picture at some point in my life, I didn’t think it would be this soon. I was supposed to start university in September of 2018, but with the surgery and other health conditions I was dealing with, I put it off and did an extra semester of high school.

I had a two-step proctocolectomy with a J-pouch. The first surgery took place in February 2019, when my surgeon removed my colon, created a J-pouch using the end of my small intestine, and constructed a temporary ileostomy. I dealt with some infections after surgery. Adjusting to life with an ileostomy took some time.

Having barely adjusted to life with the ileostomy, exactly six weeks after the first surgery, I was having the second one (April 2019), for the ileostomy reversal. Unfortunately, I experienced post-op complications after this surgery too. I dealt with infection after infection, blood clots in my liver, and iron deficiency. It turns out that I was in the five per cent category for post-op complications. Once everything cleared up and I was receiving treatment for the blood clots and iron deficiency, I was able to adjust to life again, almost as if I never had the surgeries.

In September 2019 I started university, which again was a bit of an adjustment (like it would be for anyone just starting). Not 44 OSTOMY CANADA WINTER 2023

Left: Lauren by Lake Ontario. Above: Pictured left to right, Dad Mike, Lauren, brother Vincent and Mom Tara in our backyard in Oakville.

long after being at university I started experiencing abdominal pain. I initially thought it was something I had eaten that was hard for me to digest.

However, the pain wasn’t going away, and it interfered with my ability to go to class and even to get out of bed some days. I contacted my doctor, explained what I was feeling and how it was affecting my daily life. A Magnetic Resonance Imaging (MRI) scan was ordered. As I waited for the day of my scan to come, I became used to the pain but still couldn’t live my typical life. For months I dealt with the pain every single day, and eventually I had my scan done. The results showed multiple desmoid tumours, all on various organs (some vital). At this point, I was referred to an oncologist who explained my diagnosis and treatment options to me and my parents.

The options consisted of surgery, radiation, and chemotherapy (through IV or pills). Surgery was automatically ruled out due to the complications I had, and radiation was ruled out by my doctor because patients can develop cancer because of the treatment. This meant that chemo was my only option. After talking with the doctor and my parents, I decided on the IV chemo treatment option. I had my port-a-cath inserted a month or so later to start treatment in May 2020, which then got bumped to September because of the pandemic.

After about two months of treatment, I was starting to feel better, the pain was easing up and I was able to do more things again. Then the night of Christmas Eve rolled around, and I wasn’t feeling too well. I first thought it was something that I ate earlier in the day that was causing a blockage. With the help of my parents, I treated it as such. But then I started experiencing pain, pain that I hadn’t felt in awhile. I couldn’t move and could barely utter a word. My parents called the paramedics, explained everything to them and I was taken to my local hospital. I had low blood pressure along with a high fever. My Christmas morning was spent at the hospital, where they did a lot of blood work, an ultrasound, a set of X-rays, and a CT scan. The scans and my bloodwork came back normal. I was sent home on intensive pain medication that made me very drowsy. Hours had gone by, and the pain kept getting worse. My mom called the emergency WINTER 2023 OSTOMY CANADA 45

oncologist line and explained my situation to them. They first suggested that I increase the dose of medication. Unfortunately, that wasn’t helping either; so, my mom called them back and they told her to get me to downtown Toronto as what was happening could be something to do with the tumours. The Toronto hospital ran the same tests that my local hospital had done, but the results showed that I was septic due to a bowel obstruction, and that perforation had been caused by one of the tumours. The doctors were trying everything to avoid surgery because I was a high-risk case due to my medical history and current state. I hadn’t seen my family for over ten hours because of COVID protocols (despite my inability to talk or move) and I was still in pain and extremely drowsy from the pain medication. The next thing I knew, I was being prepped for surgery, too drowsy to even know what day it was. After surgery, I woke up alone in the step-down unit, hooked up to an IV, drains, an NG tube, and a heart monitor. As the anesthesia wore off, I was able to properly realize everything, including that I had an ileostomy again.

After this surgery I faced some infections but nothing as concerning as my surgeries in 2019. Fast forward to September 2022: I have been able to go about life as if nothing happened; almost!

Despite the all the setbacks I’ve had, my chemo treatments have worked well, and I had my last chemo treatment in October 2022.

Having an ostomy again was an adjustment. The fact that I don’t know if I will have it forever or have it reversed again is unknown and is something that weighs on me at times. Also, this time around, with having my ostomy for this long I did feel insecure about myself, about my looks, if other people would notice it and about what others would think or say about me. I did let it get in the way of me living the life I knew I could have, the life I have now.

I have since been able to go out with my family and friends, go to work, go to school and work towards my future career. I have also been able to share my story and experiences in various ways, including on my social media. My ostomy saved my life, quite literally, and I will never forget that. I have had my family and close friends, who I also consider family, stick by me through it all. I will forever be grateful to all of them, and my doctors, and nurses because without any of them I might not be here today and not be able to share my story. Lastly, by being able to share my story in various ways, I hope that it reaches others who can relate to it in any way possible.

I hope that those who can relate know that they are not alone, that they can reach out to other individuals or resources to help provide them with the support and guidance they need. I also hope those who have ostomies (new or old), and struggle with the acceptance of having an ostomy (or ostomies) and struggle with the way they feel about themselves know that while it will take time to get used to, it is something that you should never have to worry about. Having an ostomy is also something that you should never have to apologize for. I have found myself doing this and still do at times. When it comes down to it there is nothing wrong with having a device that allows you to live your life. n Top left: Lauren at the Oakville Hospital emergency department.

Top right: Friend, Caroline and Lauren at the Butterfly Conservatory in Niagara Falls.

Above: Lauren at home in Oakville.

46 OSTOMY CANADA WINTER 2023

Lauren lives in Oakville, ON

OSTOM Y CANADA

WOC-EP Nurses

IMAGE BY FREEPIK.COM

AWARD

GRANT AWARD OPPORTUNITY The Ostomy Canada Society Wound Ostomy and Continence Education Program (WOC-EP) Award shall be awarded to two (2) individuals annually in the amount of $1,500 each to encourage Registered Nurses to pursue a career as an NSWOC (Nurses Specialized in Wound, Ostomy and Continence Canada) with a focus on ostomy care.

> For more information visit us online at www.ostomycanada.ca/our-awards

OSTOMY C ANADA

Post-Secondary STUDENT AWARD

GRANT AWARD OPPORTUNITY The $1,000 Ostomy Canada Post-Secondary award shall be awarded annually to encourage and assist individuals living with a permanent ostomy or other bowel or bladder diversionary surgery, to pursue Post-Secondary Education.

IMAGE BY RAWPIXEL.COM ON FREEPIK

> For more information visit us online at www.ostomycanada.ca/our-awards

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RESOURCES YOU SHOULD HAVE AVAILABLE WITH YOU:

If you are going to be travelling in Canada, prior to leaving you could check with the Ostomy Canada Society office to identify any local support groups near your destination. The Nurses Specialized in Wound Ostomy Continence Canada (NSWOCC) can give you the names of NSWOC’s in the area of which you are travelling. www.ostomycanada.ca/find-a-nswoc If you are going to be travelling in the United States, the United Ostomy Association of America (UOAA) has a webpage with a list of affiliated chapters you could check for the appropriate ones for the area in which you will travelling and the Wound, Ostomy, Continence Nurses Society (WOCN) could give you the names of WOCN’s in the area.

For international travel the International Ostomy Association includes a list of contacts in their members’ countries around

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Having an ostomy should not be a deterrent to travelling. There are no restrictions as to types of accommodations or modes of transportation used. When travelling, people with an ostomy should take into consideration: l. Climate 2. Choice of foods 3. Safety of the drinking water

the world. Again, the World Council of Enterostomal Therapists (WCET) also has a list of member ostomy specialist nurses in countries around the world.

The WCET and Ostomy Canada Society have available a Travel Information Card for people with an ostomy. The information should be completed before leaving on your trip and if for some reason you are unable to remember details it will be contained on this card. These travel cards are NOT designed to get you through customs or immigration with scissors, etc., but are strictly for information purposes.

If you are going to be in an area for an extended period of time and you anticipate having to purchase ostomy supplies, manufacturers also list distributors which can be of assistance when travelling. Manufacturers don’t always use the same code number or product names throughout the world. A local vendor could probably refer you to an ostomy nurse or doctor in an emergency.

If an emergency arises, and you are unable to contact an English speaking physician, call the Canada Embassy or Consulate.

A Medic-Alert bracelet is also a source of information should you not be able to recall or tell medical professionals that you have an ostomy.

Appliances - Always carry your ostomy appliances in your carry-on luggage. Do not put your equipment in your checked luggage

Emergency kits should include

in any mode of travel where your luggage thirty minutes, may be used to render equipment for an appliance may be separated from you. If you are contaminated water safe for irrigating bringing prescription medications with and drinking. change with precut opening, you, you should always keep them in their Halazone Tablets - are a way to purify any accessories being used, original pharmacy containers. water. Two tablets to one quart of water. handiwipes and pre-moistened Travelling by car - When your car Halazone is slow to dissolve, so put it in towelettes. You may also is parked with the windows and doors hot water and let cool. closed, heat builds up and can possibly A Water Tech water purifier is available want to carry some cause damage to your equipment, espefrom sports stores and is easy to carry with toilet tissue with you, cially in the heat of summer. Place supyou. Be warned - a five-star hotel isn’t necbecause in some countries plies in the coolest place possible, generessarily a guarantee of safe water. Another ally on the floor of the front seat. They alternative could be pop or soda water but it is not readily available. could also be placed in a cooler in the it should be allowed to go flat first. trunk. Always wear your seat belt. There are devices that can be If the water isn’t safe to drink, then don’t use it to irrigate with. purchased that lessen the discomfort of the seatbelt against your • Irrigate at night if travelling in the morning. This avoids rushing stoma. Take plenty of equipment and supplies with you. It is genand an unsuccessful irrigation. erally recommended to take twice what you would normally use, • Discard the sleeve after irrigation if unable to wash and dry before because you never know if you will run into problems of a faulty travelling - ensure you take adequate numbers with you. product, loss, heat or cold damage, or an illness and need to change • A lways carry a supply of pouches (preferably drainable) in case of more frequently. diarrhea and the stoma cap would not be sufficient. When travel• Take along plastic Ziploc bags and/or garbage bags with twist ling, your schedules may upset your normal bowel routine and ties for soiled tissues and appliances. unusual water might have an effect.

• Handiwipes and hand sanitizer are good for washing and drying and pre-moistened towelettes for cleaning hands.

HOTELS • A folding plastic cup carried in your purse or pocket can be When changing your appliance or irrigating a colostomy, used for rinsing pouches away from home. post the ‘Do Not Disturb’ sign on the door.

If you are on a cruise, ask your room attendant for the policy re disposal of soiled pouches/materials.

Emergency kits should include equipment for an appliance change with precut opening, any accessories being used, handiwipes and pre-moistened towelettes. You may also want to carry some toilet tissue with you, because in some countries it is not readily available. If it becomes necessary to change in a public washroom, water is not always available. Remember that the toilet does flush clean water into the toilet if you need moisture to clean around the stoma especially in the case of an unexpected leak.

CAMPING

• For those with a urostomy who hook up to a night drainage system, sleeping on a cot may be helpful so the gravity works to drain or it may be useful to dig a hole in a floorless tent.

• W hen using a restroom with no doors on the stalls, the best thing to do is to go into the last stall.

• W hen using public showers, I would suggest wearing flip flops to protect your feet against exposing yourself to Athlete’s Foot.

IRRIGATING

• Use a bent coat hanger or ‘S’ hook to go over the shower rod and to hang the irrigation bag on.

• If there is doubt about the purity of the water for irrigating, two percent Tincture of iodine (five drops if water is clear; ten drops if water is cloudy to one quart of water) and let stand for

LONG DISTANCE TRAVEL

If you are travelling in a sitting position for a long period, stand up periodically, about once an hour, and let the pouch contents flow to the bottom of the pouch. Empty it frequently.

• Wear clothing that is comfortable and loose enough to allow for the proper drainage into the pouch.

• A lways empty pouches before boarding or leaving an aircraft.

(Bulk may be mistaken for smuggled items) • For the person with a urosotomy, a leg bag may be a welcome addition.

CHOICE OF FOODS

Wash and peel fruit and vegetables. Avoid fresh fruit and vegetables if they are washed with water you are not certain is safe.

Over indulgence of fresh fruits could lead to diarrhea.

Milk should be pasteurized; if in doubt use a milk substitute.

Eat well-cooked food. Ensuring your food is well cooked may also save your digestive tract from problems. Seafood – can be risky.

Fresh coconut - unless taken in a small amount and chewed very, very, well for those with an ileostomy - it could cause a blockage.

Always eat a normal well-balanced diet.

Remember that an ileostomy works regardless of whether or not you eat. When the stomach is empty, the discharge will be liquid and highly acidic and gassy. Skipping a meal or limiting fluid intake can cause problems such as dehydration and electrolyte imbalance as well as eroding the seal of your appliance.

WINTER 2023 OSTOMY CANADA 49

TRAVEL INFORMATION SHEET OSTOMY CANADA SOCIETY Tel: 905-212-7111 Toll free: 1-888-969-9698 (Canada only) e-mail: info1@ostomycanada.ca www.ostomycanada.ca www.ostomycanada.ca/wp-content/uploads/2023/ 04/OCS_TravelCard_final_HR2.pdf UNITED OSTOMY ASSOCIATION OF AMERICA Tel: 207-985-9700 Toll free: 1-800-826-0826 e-mail: info@ostomy.org www.ostomy.org NURSES SPECIALIZED IN WOUND, OSTOMY AND CONTINENCE CANADA Tel: 1-888-739-5072 e-mail: members@nswoc.ca WOUND, OSTOMY CONTINENCE NURSES SOCIETY Tel: 1-888-224-9626 e-mail: wocn info@wocn.org WORLD COUNCIL OF ENTEROSTOMAL THERAPISTS Tel: 202-567-3030 e-mail: admin@wcetn.org COLOPLAST CANADA Tel: 1-888-880-8605 www.coloplastcare.com/siteassets/cc/3.-lifestyle/ l3-travel/l3.7-travel-certificate/cp_travel_certificate.pdf CONVATEC CANADA Tel: 1-800-465-6302 www.convatec.ca/ostomy/living-with-an-ostomy/ travel-tips HOLLISTER CANADA Tel: 1-800-263-7400 www.hollister.ca/en-ca/ostomycare/ ostomylearningcenter/livingwithanostomy/ onthegotraveltips CANADIAN MEDIC ALERT FOUNDATION Tel: 416-496-0267 Toll Free: 1-800-668-1507 www.medicalert.ca INTERNATIONAL ASSOCIATION FOR MEDICAL ASSISTANCE TO TRAVELLERS Tel: 416-538-1650 www.iamat.org

50 OSTOMY CANADA SUMMER 2023

Be aware that stool changes colour at times, due to foods eaten.

Things like tomatoes and beets will cause red stools. Food dyes and some medicines will also change the colour. Recall what you have eaten or medication you have taken before becoming alarmed.

If you feel cramps (sometimes very painful) or have a sudden output of watery stool, and fear a blockage, try taking a hot shower and letting the hot water run on your back for 15 minutes. This often will eliminate the cramps by starting peristalsis. If you need to seek medical attention, I would suggest that if you have an ileostomy you request that it be lavaged. (Lavage is using a bulb syringe with a catheter and putting normal saline solution into the stoma and gently drawing it back. Tap water should not be used as it could cause dehydration.)

CLIMATE

The salt output from an ileostomy is about one teaspoon per day, as opposed to almost none in the feces of a person with an intact colon. Therefore, the proper intake of salt for someone with an ileostomy is very important. However, the body may compensate for salt and water loss by discharging less salt and water than normal through the urinary tract and through perspiration.

If it is especially hot, extra fluids should be added to the diet as well as extra salt on food, for those with an ileostomy.

Salt tablets can also be a source of relief. Purchase them before travelling. The intake of too much salt should be avoided for a variety of reasons, one of which is that it may increase ileostomy output.

Read the directions on the bottle.

Fluid suggestions - water if it is safe or boiled, soft drinks in bottles or cans, soups, tea, coffee. If drinking bottled water, I would suggest that it be carbonated, as anyone can let water run into a bottle, but if it is carbonated you will know that it has gone through some process. Remember alcohol dehydrates.. Do not use ice cubes if the drinking water is potentially unsafe.

TRAVELERS’ TROTS

You may wish to have your doctor give you a prescription for an antidiarrheal medication (Lomotil) as over the counter drugs such as Imodium do not always work. Fill the prescription before you leave. Excessive diarrhea can lead to dehydration (loss of fluid) and electrolyte imbalance (loss of sodium, potassium).

Signs and symptoms of dehydration and electrolyte loss are: dry and warm skin, extreme thirst, muscle weakness, decreased urine output, numbness in the extremities, restlessness and irritability Suggestions to replace fluid loss are: • One glass of any of the following: • Water with one teaspoon of salt • Water with half a teaspoon of bicarbonate of soda.

• Plain water, orange juice, tea, cola, bouillon • Gastrolyte or Hydrolite- which is dissolved in 7 oz. of water.

• There are also sport drinks on the market.that are quickly absorbed.

Check the label to be sure there is not a high sugar content.

• Gatorade (Gatorade without sugar could be used) Foods high in sodium are: Soda crackers, pretzels, canned

crabmeat, salmon, sardines, tuna, processed cheese, canned soups, whole wheat bread.

Foods high in potassium are: bananas, halibut, dried apricots, peaches, peanut butter, sardines, grape juice.

Foods that may help to thicken the stool are: applesauce, marshmallows (several at a time), peanut butter, bananas.

TRAVEL INSURANCE

Don’t leave home without it. Even though you have provincial health coverage, it does not always cover the total cost in another province.

FOREIGN TRAVEL

Travel precautions vary from country to county, from urban to rural areas, and from short-term to long-term travel.

• Consult with your physician. It is wise to call or visit a Travel Clinic four to six weeks before your planned departure to discuss any necessary immunizations and/or prescriptions (e.g. for diarrhea or malaria) • Acclimatize - Be prepared. If you are heading to the beach take along adequate sun protection, sunglasses and a hat. If you are heading to the mountains, be prepared for colder temperatures, and altitude sickness if you’re taking on big climbs.

• Protect yourself from insects. Insects, particularly mosquitos, can be carriers of disease. Insect repellant, long pants, shirts with sleeves and mosquito netting for sleeping accommodations, prove to be important protection.

• Avoid bare feet. Proper footwear can protect the traveler from cuts, and the possibility of picking up bacteria and infections from the sand or soil (often the result of animal excrements).

• Make sure you take prescribed malaria pills if they are recommended.

• Be very cautious about swimming in fresh water. The ocean and chlorinated swimming pools are fine, but in some areas, fresh water can harbour harmful. organisms. When talking about swimming it is a good time to mention bathing suits. I suggest for women that they wear a bright coloured printed bathing suit to help camouflage an outline of the appliance. Men may prefer to wear a boxer type of bathing suit.

There are no guarantees. You can do all the right things and not stay healthy, and you can do all the wrong things and stay healthy. Just use your common sense, and have a great time.

So make your slogan “Have Pouch - Will Travel”. n Dianne lives in Mississauga ON and is a member of Ostomy Toronto and Halton-Peel Peer Support Group.

SUMMER 2023 OSTOMY CANADA 51

Youth Camp Camp was an amazing week! Highlight summaries include: *the weather was great, *the airport days went as smoothly as possible, *the charter bus they all shared from the airport to camp was filled with chatter and laughter, *the time at camp from greeting friends from past years to meeting people who would soon become new friends was heart-warming to watch, *the activities where the kids push themselves out of their comfort zones to explore their capabilities and then feel powerful and confident once they achieve the challenge fills everyone with strength and power. The bikes, the hikes, the water fight, the High Ropes Course, and the Giant Swing, fills us at every age with nervous butterflies building in our stomachs until the moment they yell, "Ok, 3, 2, 1! The programming by the admins and volunteers is one of a kind and includes a special sharing circle called Magic Circle, as well as the intimacy talk with the 15 and older teens, and then the one-on-one moments that the kids share with volunteer mentors who all have ostomies themselves. Our mentors are hand-chosen from their applications, we all have an ostomy so we have walked the walk and talk the talk about our experiences. No other camp in Canada has this special programming, nor their own NSWOCs who so generously give up vacation time in order to come and be available to help mentor our kids along their journey. The campers leave camp more independent than when they arrived. Please enjoy these letters of thanks and photos of joyous faces who your support and donations have ensured the opportunity of this lifechanging experience. Please follow this link for more information on camp and how to donate to Youth Camp - Argue Family Fund-the name of the donation page in the drop down menu. ~Lisa, Ostomy Youth Camp Administrator

2023 2022 - Darcy is a bright young lad with a keen interest in engineering, building Lego, Minecraft and his flock of chickens! He’s nearly 15 years old and had recently started learning Pursuit Cycling at the Milton Velodrome. At the beginning of March, we spent 35 Days at McMaster Children’s Hospital after Darcy underwent emergency bowel surgery. Unexpected complications arose and Darcy had to have a temporary colostomy. It has been two steps forward and one back, repeatedly.

Infections led to multiple abscesses, including one the size of a football which needed to be drained. Breathing issues, a compressed diaphragm and two rather aggressive incision wound infections all added to his recovery challenges. The ostomy part has gone surprisingly well and Darcy has adapted to this new lifestyle far better than imagined. He proactively manages all of his care himself. We are hoping for his reversal to be completed this August. Whilst at MAC Darcy missed his younger sister who came in to visit with dad every other day, to go to the Teen Room together to play computer games or go for walks around the hospital.

When our wonderful Wound Care/Ostomy Nurse told us about this camp in Alberta specifically for kids with an ostomy, it got a big, excited smile from Darcy. Having something very special and unique to look forward to has definitely been a ray of sunshine. Especially as it would be with like-minded children from across the country, all sharing and understanding the challenges that ostomies can bring. Having the medical support staff onsite as well as the other volunteer mentors is fantastic.

Darcy has faced each day with fortitude, a sense of humour and some occasional colourful language! As a family, we would really like to thank you all. We appreciate all the help and support that you share. This will be an amazing, positive life experience for Darcy and will really help him on his journey.”

On May 27 Oakville/Halton-Peel Peer Support Group held its second golf tournament in support of the Ostomy Canada Youth Camp. This year we had 21 golfers and raised $1560 dollars. We raised enough money to fully sponsor a local youth (Darcy) who lives in Burlington. He had a great experience and is looking forward to attending camp again next year. I would like to thank all of our participants and hole sponsors: Coloplast, Alba Medical, Adjust to Home, Safe and Simple, Brant Arts, Wellwise,

52 OSTOMY CANADA WINTER 2022

Darcy Pralet and Kevin Taziar of Oakville/Halton-Peel Peer Support Group

Wellspring and Hollister. I would also like to thank all of the organizers: Nancy Plume, Richard Olley, Kevin Taziar and Steve Maybee.

2023 - This past summer I went to Ostomy Camp at Camp Horizon, Bragg Creek in Alberta and had a great time. I made lots of friends of all ages who were going through similar issues that I was. It was nice to see how the majority of the volunteer mentors were also living with some form of ostomy and they showed us how you can still be successful and have a great life, while having an ostomy along with the up’s and down’s of having one.

With the people at camp, another highlight was the landscape surrounding the camp in the Canadian Rockies. A vast area of huge mountains, beautiful rivers and tall trees. Being surrounded by nature is an amazing feeling that I hope most people can experience at least once in their lifetime.

At camp I enjoyed taking part in the many activities such as, High Ropes. I personally loved climbing across the High Ropes on

both the easy and the hard layers. I found that for some reason, the fear of heights I have was not as apparent as usual so I could just enjoy climbing with everyone. Another fun thing we did was the giant swing which drops you from around 25 feet in the air, on my turn I tried to flip upside down but while flipping over my shoe went flying off into the bushes.

Other activities were hiking, rock climbing, archery, crafts and a massive water balloon fight at the end of camp. We also spent the night sleeping in large yurts; that was a little chilly. Campfire was a good way to end each day with everyone singing songs and winding down from that day’s activities.

The campfire area has an amazing view over the Rockies where you can see for miles. Far in the distance some of the huge mountains have snow on their peaks which was surreal to see as it was almost peak summer heat. One of the days some of us went on a long trek up paths which at times got very steep; it took us awhile to get to the top but the view was worth it. On the way down it started raining. As we all rushed back the rain kept getting stronger. Just as we were getting back to the travel bus the rain became a thunderstorm.

During my time at camp I really enjoyed the morning and evening communal times in the lobby area of our cabins. It was a time to relax and just spend time with each other. Most of the time there was either a card game happening or a puzzle being put together.

I live in Burlington and the camp is 2,400km away, so I needed to take a flight which was amazing as I haven’t been on an airplane for almost six years. I missed the feeling of flying and the view.

It was very reassuring knowing that there were nurses on site that could help if anyone had any issues or were missing some supplies. This was an amazing experience which created memories for life. I am very glad that I was one of the lucky kids to attend this year. I enjoyed every part of it and I hope that I can attend again next year post- reversal. Thank you to the Ostomy Support Group of Halton/Peel for sponsoring me and to Ostomy Canada for sponsoring my flight. n ~Darcy Pralet Thank you from the Pralet Family (Reprint permission from Oakville/Halton-Peel Peer Support Group).

WINTER 2023 OSTOMY CANADA 53

Youth Camp

2023

The older girls’ group with volunteer, Tabitha (green jacket)

Having had new, first time volunteers this past July, I asked them to choose their favourite photo and to explain the meaning it has for them.

Tabitha In July 2023, I had an amazing opportunity to be a volunteer mentor for camp. Not only was it my first time travelling with my ostomy but it was my first time travelling alone. It was amazing to see all the support and comfort this camp brings to everyone involved and to learn that you’re not alone. This experience definitely helped me and reconfirmed to me that I was making the right decision in going to school to be an educational assistant in the Fall.

Everyone deserves to feel as though they fit in in this big world and everyone deserves a chance to just be exactly who they are. ~Tabby W *first time OCS volunteer mentor

2023 grads and the camp volunteer mentors

Ryan I wanted to share this picture because it perfectly captures that bittersweet moment as these campers reach the end of their camp journey and begin the journey of helping the next generation of young ostomates. Camp Horizon holds a special place in my heart as it provides kids with a safe haven. Here, they can drop their walls, release their insecurities, and find the unwavering support they need from volunteers and fellow campers with the same lived experiences. Seeing these campers go through this journey of self-acceptance and discovery is an indescribable experience. Even though these campers are leaving camp for the last time, they aren’t sad as they express their eagerness to start giving back. They can’t wait to extend their hand to the next generation of ostomates and offer the same help and support to others in their communities, just as they received while at Camp Horizon.

No other camp offers the experience of Camp Horizon as it’s not just a camp, it’s a tight-knit community where irreplaceable bonds are formed and lives are positively impacted. I am grateful for the opportunity to play a role in their lives and support them in embracing their true selves." ~Ryan I *camper 2004 – 2011, volunteer mentor 2022/2023 54 OSTOMY CANADA WINTER 2023

Janet One of my favourite moments at camp is when our campers realize that all of our volunteer mentors and both Lisa and I, were also sick when we were kids and that we all have some type of ostomy.

The added bonus this year was when a first-time, young camper realized that he was not alone and that Lisa and I (and another camper Ollie) also have the same type of permanent iv implanted in our chests. He thought he was the only one, but showing him our ports made him smile and maybe feel a little less scared. ~Janet P *Ostomy Canada Youth Camp Co-Administrator (volunteer mentor since 2014)

Lisa, camp administrator and Landon

Lisa, Parker and Janet show their port o’caths

Lisa One of my favourite moments at camp this past July was this photo capturing myself and a new camper deep in conversation. The chat served as a great reminder for me that even though I am in the admin position, I desperately need and thoroughly enjoy interactions like these when they happen randomly and organically. It is an opportunity taken to make and deepen a bond that carries on for years to come. ~Lisa G *Ostomy Canada Youth Camp Co-Administrator (volunteer mentor since 2007)

Carly There is a classic camp song titled “Home like Horizon” that goes, “I’ve got like home like Horizon; I’ve got like home like Horizon; I’ve got like home like Horizon in my soul”. Camp is truly the safest space for a young person with an ostomy, and it feels like coming home each and every year.

Sending a big shout-out to our new campers and our veteran campers. One of the biggest highlights is seeing each and every one of you come out of your shells, be more confident in yourself, try new things and push yourself to face your fears (like the high ropes course, hiking, climbing the rock wall). ~Carly L. *Camp Alumni from 2004-2011, volunteer mentor, nursing student/nurse 2014 to present, Camp NSWOC 2019 to present Head NSWOC at camp, Carly with Callie, Jaime and Harper

Denise I have a hard time conveying how special a week Ostomy Camp is for me. Through my tears, I can express the huge impact camp has on my life each year. To have the opportunity to be a part of each camper’s week of life-changing experiences is truly a privilege! Camp is an extremely special and transformative experience for each camper and I have the honour of being there to learn from each of these amazing human beings along the way.

One of my favourite memories of camp this year was the planned, and well executed ambush I experienced during the water fight. I was tricked by a group of campers and well I admit, I fell for it.

It wasn’t long before I was soaked by campers, and a few volunteers. I was an easy target, I do have to admit it was pretty refreshing.

I am also happy to say that I finally accomplished the giant swing. I may have shed a few tears but I am so proud that I did it! I want to thank the campers for being there with me while I conquered my fear. Here is one of my favourite pictures from camp and it is one of many pictures that I will treasure. I do have to tell you though that I may have been sprayed in the face right after this picture was taken. I blame the young man to my left (my son Hazen). Little did I know that this was all part of his plan. ~Denise N *NSWOC and volunteer mentor 2018 to present

Denise, camp NSWOC and son, Hazen

Adrian As I spent time with the kids, I quickly noticed that ostomy camp is a special place. It is the sharing of stories and information, where kids discuss experiences they have had with their ostomies, and the understanding Adrian and the older boys’ group between campers who with Easter seals counsellors had faced similar health challenges which helped to create an atmosphere of camaraderie, and respect. I was nervous when I arrived to volunteer, but my worries were washed away as I quickly discovered that this is a safe space for ostomates. The week was also rejuvenating for me. I have had my ostomy for two years, and before camp I had not met many people who had ostomies. Watching kids with ostomies being kids, and watching adults with ostomies be adults, has and will continue to help me with the acceptance of my own ostomy. ~Adrian G *first-time OCS volunteer mentor

Joel, grad and Ryan, volunteer mentor

Chris I chose this picture because it captures what I view as one of the most heart-felt moments and the epitome of why I (not pictured) volunteer. This was from the final camp fire and grad night. It captures something truly amazing: the heartfelt connection between the camper and the volunteer. ~Volunteer mentor 2022-2023

Jaylyn I chose this great action shot photo. This is my favourite photo from camp as it shows kids being kids. All of the campers have faced various hardships and struggles throughout their lives; camp gives these children a safe Jaylyn with the place to express themselves young girls’ group and allows them to feel the joy of ‘just being a kid’. I am grateful to have been a small part in fostering a safe space for these deserving kids to connect with each other and also with the great outdoors. ~Jaylyn W *first time OCS volunteer mentor WINTER 2023 OSTOMY CANADA 55

Living With an Ostomy

has Given me my Life Back

by April Parsons

My story began at the young age of 14. I suffered with fatigue, migraines, sharp abdominal cramps and dealt with many bloody bathroom trips. I went from being a very social, energetic child to being housebound and quiet. Over the course of several months, my mother noticed that my personality changes weren’t just "typical" teenage behavior and finally asked what was going on. When I confessed about what had been happening, my parents took action and whisked me off to the hospital. Life as I knew it was about to change forever. There were endless hospital trips, so many doctors and even more needles. I had blood transfusions, scopes, X-rays, CT scans, MRI’s, barium tests and the list just went on and on.

After what seemed like forever, we finally reached the diagnosis that I had ulcerative colitis. At last, things seemed to slow down. I felt healthier, stronger and seemed to have gone into remission after starting on the biologic, Remicade.Remicade ‘worked’ for about six months until I had another attack which led to me needing to have a total colectomy. I then was living with a temporary ostomy bag from the ages of 16 to 18. I recall at that time that I was terrified of having ostomy surgery. I wondered what people would think about me? How would I cope? There were so many unknowns.

My diagnosis was trying to take me down, but at some point in time I became resilient and kept fighting for myself. I had dreams of being married, buying a home and becoming a mother so that’s what I worked towards.

The day they marked my ostomy placement, I stood in front of a mirror and really looked at my body. The realization of the changes that were about to happen sank in and I broke down sobbing. All of these negative thoughts swarmed my mind. Thoughts like, "People will notice. People will judge me. I won’t be able to leave the house. I won’t be able to see my friends." Little did I realize at the time, people already noticed I was sick. My illness already kept me from leaving the house and seeing my friends. But I didn’t 56 OSTOMY CANADA WINTER 2023

know anybody with an ostomy so it wasn’t ‘normal’ or natural to me. Thankfully my parents hadn’t left my side and I had a huge support system with family and friends all encouraging me and helping to make the transition easier. After I had ostomy surgery, I regained my strength. I began looking and feeling healthy again. My bag wasn’t noticeable under my clothes and NOBODY judged me. Life actually seemed normal again. The children’s hospital reached out to me after surgery about attending an Ostomy Camp (Easter Seals

Left: April with son, Dawson.

Above: April with Husband, Stephen and son, Dawson

Camp Horizon) in Alberta. This camp welcomed children from across Canada who live with bowel and bladder issues to partake in fun and have exciting experiences for a week during the summer.

Deciding to go to camp was one of the biggest life changing experiences for me. I met so many people who were just like me, who were all living and thriving in life. We shared our stories, developed friendships, asked questions, learned from one another and built incredible bonds. It’s because of camp that I accepted my condition.

I learned to accept myself and I regained my confidence. In 2010 I had my reversal. I lived a good healthy lifestyle for approximately a year until I started experiencing increased bathroom trips, more cramping and overall, just feeling unwell again. Unfortunately, my healthcare team wasn’t as exceptional as it had been when I was a

child so I had to live this way for far too long, all while having to do adult-y things. While living with these debilitating symptoms, I was dating, went to college to become a nurse, worked for a year then I developed Ankylosing Spondylitis which ultimately took me from my nursing career. My diagnosis was trying to take me down, but at some point in time I became resilient and kept fighting for myself. I had dreams of being married, buying a home and becoming a mother so that’s what I worked towards.

Of course, while life moved on, I kept advocating for myself to receive better healthcare. I was sick of being sick. (Heck, even on my wedding day I missed out on photo ops and speeches because I was in the bathroom!) Ultimately, I was told to have children before I looked into more abdominal surgery, so that’s what I did.

My husband and I struggled with infertility for three years before turning to IVF where we conceived the most perfect little boy.

Somewhere through all of the struggles, in 2021 I finally found two wonderful doctors who took my life seriously. My new GI specialist told me that ostomy surgery needed to happen as soon as possible. I pushed it off because I was breastfeeding, but I was at an all-time low and needed to get things in motion.

I was weak and went to the bathroom 50+ times a day. I was canceling plans with friends and the major deal breaker was not being the best mother I could be for my son. I met with my surgeon in January 2022 and in March I had my permanent ileostomy surgery.

Although I’ve had a few complications since then, I would do it all over again. Living with an ostomy has given me my life back. I’ve since regained the spunk that I lost in my childhood.

I’m full of life, I’m energetic and I’m back to doing regular social activities outside of the house without worrying about where the nearest washroom is! My diet is much healthier, I can finally exercise and I’m leading a lifestyle that I’m not only proud of but one that I would have never been able to do without my ‘bag buddy’. I’m able to play, dance, and do fun activities with my son and I’m genuinely so much happier. Oh, and something fun and exciting! I’ve been learning and developing an incredible photography business that I’m so proud of! An ostomy hasn’t slowed me down in the slightest and if anything, I would say it has given me a life that I could only have dreamed of before.

I try to chat openly about living with an ostomy any chance I get. If we don’t normalize ostomies, who will? If we feel uncomfortable talking about ostomies, so will others! If we don’t educate people about ostomies, people will never know what a normal and happy life you can still lead while having one! An ostomy doesn’t have to be scary; it can help you be the best version of yourself and help you create a magical and beautiful life! n April lives in Fortune, NL and is an Ostomy Canada Youth Camp alumni. April appears on the OCS website landing page as well as on the membership form (p. 15)

WINTER 2023 OSTOMY CANADA 57

Journey to the Finish Line

Navigating the Chicago Marathon with an Ostomy

by Brock Masters

The word ‘ostomy’ echoed in my ears for the first time when I was just 15 years old. The daunting prospects of a life-altering surgery led me on a quest to find any alternative solution or experimental procedure available. Yet, when the inevitable day arrived, the surgery didn’t signal the end; it became the launchpad for a remarkable journey of resilience, grit, and serendipitous twists. A few years ago, a news segment about wheelchair racing transported me back to my youth when racing became a passion. That flicker of nostalgia reignited a dormant flame. An opportunity knocked, inviting me to witness an event showcasing the best in wheelchair racing. Little did I realize then, that this would be the beginning of my journey towards the Chicago Marathon’s hand-bike/ hand-cycle division.

Life has an uncanny way of linking our past to our present. A casual Facebook post about my interest in wheelchair racing reconnected me with an old acquaintance from two decades ago. This led to an invitation to join an adaptive sports group. What made it even more special was discovering that Hollister Incorporated,

the marathon’s hand-bike division, a challenge I eagerly embraced.

The complexities of training with an ostomy are manifold. One looming concern was the endurance of my ostomy gear under the rigors of intense physical exercise. But with the right combination of athletic attire and a switch to convexity, I managed to strike the perfect balance between my physical ambitions and my ostomy’s needs.

My meticulously designed regimen, blending cross-training, weight lifting, and hand cycling, was a dance between pushing boundaries and paying heed to my body’s signals. The virtual training sessions were as real as it gets, simulating actual terrains and conditions which prepared me for the big day.

To ensure the marathon went off without a hitch, I took some preemptive steps. Clearing my system was paramount to avoid any unexpected ‘special deliveries’ mid-race. Yet, the marathon day began with its own set of challenges. From equipment malfunctions to last-minute physical discomforts, the day tested my resolve.

But 23 years with a stoma had instilled in me an unyielding spirit.

Left: People from the Great Lakes Adaptive Sports Association where Brock coaches wheelchair racing (glasa.org).

Right: The morning of the race Brock is in the hotel lobby with a number of different participants.

my employer of 18 years, was backing this initiative. Just as I was revving up for the marathon in 2020, life threw its curveballs. The global pandemic led to the postponement of the event, and I suffered from injuries which demanded surgical interventions. But as they say, every cloud has a silver lining. The delay introduced me to 58 OSTOMY CANADA WINTER 2023

Throughout my journey, I’ve drawn inspiration from many quarters. Be it from individuals who’ve achieved incredible feats postostomy surgery or the young athletes I’ve had the privilege to coach.

They serve as constant reminders that the human spirit remains undeterred in the face of adversities.

A quick selfie before the race started.

Below: An art piece a friend did for Brock based on a photo taken during the race.

Life has an uncanny way of linking our past to our present. A casual Facebook post about my interest in wheelchair racing reconnected me with an old acquaintance from two decades ago. This led to an invitation to join an adaptive sports group.

For those embarking on a physical challenge post-surgery, my advice is twofold: always listen to your body and consult professionals. But, above all, cultivate unwavering self-belief. Let your inner voice be one of encouragement and optimism. The photographs from the marathon encapsulate this transformative journey; each image, from the determination mid-race to the joyous exultation at the finish line, paints a thousand words. Now, as I look forward, I’ve set new milestones. The Berlin Marathon in 2024 is on the horizon, and there’s the challenge of bettering my Chicago Marathon timing. I’ve come to see these events not just as personal quests but as platforms which send a powerful message of hope and capability. When I speed past onlookers during my training sessions, I’m reminded of the ripple effect of my journey. To everyone grappling with their challenges, know this: no matter the hurdles, with determination and a resilient spirit, every finish line is within reach. n

Brock lives in Chicago, USA

Editor’s note – Brock placed second in Chicago. He has been selected to represent GLASA on September 29, 2024, during their 25th anniversary year at the 2024 Berlin Marathon!

He says, “This is a golden opportunity to not only challenge myself further and grow as an athlete; but also to raise awareness and support for athletes with disabilities”. @Brocknessmonsterr

WINTER 2023 OSTOMY CANADA 59

My Ostomy

BALLOON

Helped a Student Reach the Moon

by Lynn Wolfson

Lynn Wolfson Sometimes being an ostomate can present new opportuniand her service ties. Sometimes, a bad situation can be overcome to achieve dog and best something very positive. I have been fortunate enough to companion, Zev have experienced such an incident.

In 2002, I was teaching high school mathematics. I had been teaching since 1990, so by this point I was an experienced teacher. Over the summer, I had gotten my second colostomy after not having one for 36 years and never ever having had to teach with one before. This school year I was assigned to teach Informal Geometry. The class consisted of students who in my opinion, were very smart but education and mathematics were education.” I was absolutely amazed at the One day, David came up to not a value or priority in their lives. Few sturespect that these students gave to David. dents paid attention in class or completed For the rest of the school year, David was my desk and asked if I would homework assignments. However, one stualways there for me. Now, I wanted to share with him what was dent really stood out to me and his name do something special for David. I asked under my dress that kept was David. David would always behave very David why he was in this class. I said he blowing up like a balloon. I respectfully, would complete his homework, probably belonged in regular Geometry and would ask excellent questions. From or maybe even in Honors Geometry. He explained my ostomy to him, this behavior, I realized that David was very responded by telling me that he was from and he clearly comprehended mature for his age and was destined to be Alabama and in Alabama, they respect it and took it very seriously. successful in life. This class was held right authority. The Guidance department had after lunch. My ostomy bag would blow up told him he belonged in this class and after I ate. While I was standing in front of the class, reviewing that was where he would be staying. David completed his tenthhomework, and teaching the new lesson, these students would be grade year with me in Informal Geometry. The following school yelling out and asking if anyone had a pin or dart to pop the balloon year, David came to visit me in my classroom. He was now in elevunder my dress! They were unknowingly referring to my ostomy enth grade. I asked him when he planned on taking the SAT’s. He bag. I would try to distract them and get them to focus on what I responded that he would not be going to college as his father was was teaching; however, they were getting difficult to manage. in a wheelchair and his mother was the sole bread winner for his One day, David came up to my desk and asked if I would share family of six. His parents were looking forward to David graduatwith him what was under my dress that kept blowing up like a baling from high school and going to work in order to help the family loon. I explained my ostomy to him, and he clearly comprehended financially. I suggested that he take the SAT’s anyway. He came it and took it very seriously. The following day when the students back to tell me that his parents could not afford to pay for the SAT. started yelling for the pin or dart, David stood up and walked in I told him what to do so that he would not have to pay for the test. front of me while I was teaching, spread his arms out, and said, “You David took the test. He scored very well. I told him that with the will have to deal with me before any of you can touch our teacher.’’ scores he got, he really should apply to college. He reiterated his He then continued to tell them, “If you ever want to be respectful family’s financial situation. I asked for his parent’s phone number. and grow up, you need to listen to Mrs. Wolfson and get a good I called and invited David and his parents to a very nice restaurant

60 OSTOMY CANADA WINTER 2023

for lunch and I picked up the bill. During this lunch, we discussed how David’s earning potential could be so much greater if he had a college degree. His parents listened and said, “OK Teach, whatever you say!”.

David continued to keep in touch with me via e-mail over the summer and visited me in my classroom during his senior year. At this point, I said, “Time to apply to colleges!” He still felt hesitant not being able to financially help his parents for another four years.

So, I suggested, “Let’s just apply to Florida Atlantic University, Florida International University and University of Miami.” David’s response was: “Come on Mrs. Wolfson, University of Miami is for rich kids!” I told him to apply to all three and just see what happens.

In April of David’s senior year, he came running into my classroom with a letter yelling, “Mrs. Wolfson! Mrs. Wolfson! You have got to see this!” David had gotten into the University of Miami, one hundred percent paid for, including room and board!!

In August, David started to get cold feet and was not sure he wanted to leave his parents to go to the University of Miami. He had to help his dad with his personal needs. I told David that his mother would need to do this if he was to get an education so he could make a nice salary to support himself, his future family, and his parents. I took David’s parents out for another lunch to be sure that they were supportive of the direction I was giving David. They were all onboard with the plan.

David e-mailed me while at school and told me that he did not know what to major in. I told him that math or sciences are the best majors as he will always have a job. He decided on Neurobiology.

He continued to call and e-mail me. He also asked about my health.

I was always very honest with him about where I was medically.

David and I had lunch together whenever he came to visit me from school. Some of our lunches included his parents and other times it was just the two of us. I kept up with what he was doing in school, and he kept up with my medical situation. He knew that I was simultaneously having many surgeries. Actually, I had surgery in 2002, 2003, 2005, 2008, 2011, 2013 and 2016. He was always asking for the details of my surgeries.

When David became a junior in college, I suggested he take the MCAT. He was very surprised, as that is the entrance exam for medical school. Again, he could not afford the price of the test nor the study materials. I told him to get a job at one of the review courses and to borrow materials and sit in on classes while getting paid minimum wage.

David took the MCAT and did very well. I told him to apply to medical school. I got a call in October of his senior year. David got into Yale and Johns Hopkin Medical Schools, again one hundred percent paid!! He did not know what to do. I asked what the problem was. He told me he was not comfortable being so far away from his parents. I once again explained that if he became a doctor, he would be able to much better support his future family as well as his parents. We decided on Johns Hopkin because of the direct flight to Baltimore and a direct train from the airport to Johns Hopkin.

David continued to call and e-mail me from Johns Hopkin. He was upset that the cafeteria was only open for lunch, and he did not know how to cook. I sent him a book, A Man, A Can and A Plan

and told him to not to forget to eat salad. In January of his first year, David called me to tell me that he would be presented with his white coat and stethoscope in March. He told me that he was told to invite the person who most influenced him to go to medical school. He said that I was that person and would I come up and be at his White Coat Ceremony!! Of course, I said, “Yes!!”

I was absolutely thrilled to watch David as he received his white coat and stethoscope. I had tears in my eyes, as I thought back about the boy who was in my Informal Geometry class! I was so very proud of him!

David continued to keep in touch with me. I took David out to lunch whenever he came back home. David invited me to his graduation! It was truly an exhilarating experience! I was just so proud of him and his accomplishments! His family was beaming with pride!

David went to UCLA for a year for his internship. Then he went to NYU for his residency in Anesthesiology. He then worked for a year to make some money. Then, David went to Cedars Sinai for a fellowship in Thoracic Anesthesiology. Today, David is working in Dallas as a Thoracic Anesthesiologist. He can live comfortably and help his parents. I could not be prouder of him!

Imagine, this all started because my ostomy bag kept blowing up while I was teaching! n Lynn is a contributing author for Ostomy Canada and lives in Florida.

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WINTER 2023 OSTOMY CANADA 61

Home Health Ostomy Nurses: A Key Part of a Smooth Transition Following Ostomy Surgery

by Chutiwan Tanasapphaisal MSN, RN, CWOCN Typically, patients spend only a few days in the hospital after ostomy surgery. Patients may experience pain and discomfort during this time. In addition, patients must mentally adjust to the fact that they no longer have control over their continence and must now wear a pouch 24/7 to collect their waste. It is a life-changing experience. Due to time constraints and patients’ physical and mental conditions, ostomy teaching in the hospital is usually not very effective. I have provided ostomy teaching to many patients. Most of them could not change their pouches independently before being discharged.

There was one patient I still remember clearly. He was a 35-yearold male with ulcerative colitis who underwent stage 1 Ileal Pouch Anal Anastomosis (IPAA) or J-pouch surgery. Over the course of three days, I spent almost an hour each day teaching him how to open and close his ostomy pouch. It was very frustrating for him to be unable to do something as simple as this, let alone to change the pouch. Three months following the first surgery, I met him again when he returned for stage 2 IPAA. Aside from being capable of changing his pouch, he also had a solid understanding of ostomy products. Fortunately, following his discharge from the hospital, he was seen by a home health ostomy nurse for a few weeks. This nurse taught him so much about ostomy care and helped him develop his ostomy skills. In addition, she empowered him to become independent with his own care. Thanks to this nurse, I felt happy for him. Although all of my ostomy patients are discharged home with home health care, many of them are not seen by ostomy nurses because not all home health care agencies have ostomy nurses. There are times when patients experience pouch leakage and peristomal complications after discharge, but many home health nurses lack ostomy care training and knowledge of ostomy products. Patients would contact me with their problems and tell me what they were going through. I could help them over the phone, by email or make an appointment for them to come to our outpatient ostomy clinic.

There is a huge need for home health ostomy nurses. Ostomy nurses’ roles are essential to ensuring a smooth transition from hospital to home. For this reason, I always wanted to work as a home health ostomy nurse. I believe I can make a difference in the lives of ostomy patients. This has been on my mind for a long time. My long-awaited opportunity arrived in October 2021. The job posting for home health ostomy nurses caught my eye. Without hesitation, I applied for the job. My interview resulted in a job offer the next day.

Last December, I started a new position as a home health ostomy nurse. I enjoy my job very much. Home health ostomy nurses play an equally important role as do other ostomy nurses. I have taken care of several ostomy patients since I started working as a home health ostomy nurse. One of my patients was an 80-year-old female patient with rheumatoid arthritis who lived alone. I helped her find an easy-to-use pouching system. She was given two-piece-cut-to62 OSTOMY CANADA WINTER 2023

fit pouches after leaving the hospital. Her stoma was oval, and her hands were arthritic, so she had difficulty measuring and cutting the wafer. It was also difficult for her to attach the pouch to the wafer.

On my first visit, I remember watching her spend so much time cutting the wafer. Ostomy care was very challenging for her, and she was unsure if she could handle it on her own. She felt hopeless. Even though her stoma was new and would shrink over time, I decided to have her try a one-piece-pre-cut pouch and to use a moldable ring to fill in the space between her stoma and the wafer opening. She found this to be a feasible result. I saw her for a few weeks until she could change her pouch independently. My assistance in finding this pouching system made her so happy. During my last visit, she gave me a big hug and a big smile.

Another patient I saw was a 73-year-old female who had an ileostomy and was experiencing leakage. She had had an ostomy for about two years, but she was never seen by an ostomy nurse. Due to abdominal folds, creases, and liquid-like output, her wear-time was one day or less. She said she feared that her pouch would leak if she left her house, so she decided to isolate herself at home. Her stoma was permanent. In her mind, she thought she would have to live with a leaking appliance forever. Her husband was the one who helped her change her pouch. He sometimes spent hours changing her pouch in one sitting because her output would come out nonstop. In addition to teaching them how to fill the creases with rings and paste to make her skin even and choosing the right pouching system for her, I also educated them about diet. I also contacted her doctor about possible medications to help slow down her output. Finally, they were able to resume their normal lives. They were so grateful for my visits. She told me that I helped her get her freedom back.

It has been rewarding to work as a home health ostomy nurse.

My favorite parts of my job are assisting ostomy patients and their families in becoming more independent in their ostomy care and solving their own problems. It fills my heart with joy when my patients and their families smile when they can change their ostomy pouches and their pouches stay intact for several days. Most importantly, they can resume their lives as to how they were prior to their ostomy surgery.

I would like to use this opportunity to thank all home health ostomy nurses who help their patients regain their lives. When the opportunity arises, I encourage ostomy nurses to seek out work in home health care settings. You have no idea how much impact you can create on patients’ quality of life. I did not realize this fact until I experienced it myself. n Chutie is a contributing author to Ostomy Canada. She lives in Los Angeles, CA, USA.

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