Ostomy Canada Magazine - Winter 2022

60th Anniversary History Camp Came Back Step Up 2022 Winter 2022

CR#: 119277093RR0001 ISSN 1703-1818 CANADA POST #40038803

THE ONLY THING THAT GETS CUT OUT IS THE WORRY. No cutting or guessing means saying yes to everything else in life.

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Nothing protects like ConvaTec To request a sample, visit convatec.ca or contact us at 1-800-465-6302 or convatec.canada@convatec.com Model portrayal. ©2021 ConvaTec Inc. All trademarks are property of their respective owners. AP-034229-MRL-CA 1 Maria Teresa Szewczyk, MD, PhD; Grazyna Majewska, RN, ETN; Mary V.Cabral, MS, FNP-BC, CWOCN-AP; and Karin Holzel-Piontek, RN; The Effects of Using a Moldable Skin Barrier on Peristomal Skin Condition in Persons with an Ostomy: Results of a Prospective, Observational, Multinational Study, Ostomy Wound Management 2014;60(12):16–26.

2 Consumer sampling survey, N=61, ConvaTec Inc, February 2021, data on file.

1962

years

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STORIES •SUPPORT • INSPIRATION Winter 2022 | Volume 30, Number 2

16 | Step Up For Ostomy 2022 20 | WOC Nurses Take Part in Worldwide Virtual Ostomy 5k 20 | Paula: I Wouldn't Change my Ostomy for the World 21 | Joel Jacobson: 1940–2022 22 | Ostomy Canada Youth Camp 27 | H elping the Ostomy Community One Client at a Time 30 | C elebrating 60 Years of Mutual Support and Self-help Célébrons 60 années de soutien mutuel et d'entraide 36 | Our Members Win Awards 39 | A dvocating Together for more Support from

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Healthcare Leaders in Nova Scotia 40 | 60th Anniversary Heroes/Ambassadors 44 | The History of FOWC 46 | Brian Meloche: Ostomy Specialist 49 | My Personal Story, I have a Urostomy 50 | Rocky Mountaineer 52 | Passion Project 53 | NSWOCC Indigenous Wound, Ostomy and Continence Health Core Program Launches “Sharing Circle” Website 54 | History of Ostomy Canada Magazine 56 | Ostomy Canada Youth Camp History

S & C CURRIE PHOTOGRAPHY

49 | A Full-Circle Gift of Happiness

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56 | I am a Nurse who Loves Ostomies

DEPARMENTS 4 | Editor’s Message 6 | Chair’s Message 8 | Executive Director’s Message 10 | NSWOCC President’s Message 12 | UOAA President’s message 14 | Ask the NSWOC 28 | Ask a Medical Lifestyle Advisor

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.

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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 2022 OSTOMY CANADA 3

EDITOR’S MESSAGE Tattoos – My Body, My Choice “Tattoos are just scars with better stories” is a quote I heard from a young lady at Ostomy Canada Youth Camp, and the idea resonated with many of us. Scars are reflections of a traumatic past, whereas tattoos celebrate our histories, our stories, and our acceptance so that we can fully express ourselves.

Tattoos seem to be becoming more popular (less taboo) with each generation. Like many of you have probably also done, when I see a tattoo I tend to inquire as to the meaning behind it. What does it mean to you? Why did you choose that particular design? I am learning that tattoos don’t have to have a meaning. In discussions that I had after getting my first tattoo, I found myself almost defending my choice to get one and it should never have been necessary to do so. Do tattoos have power? The power of tattoos is extremely potent, not only in the intent but also in their image and permanence. When I turned 50, I got my first tattoo. The image is of a dolphin carrying lavender in its mouth. It has significance to me, but making this even more memorable was sharing the experience with my son.

But do scars have power? When we see someone with a scar, we ask or at least wonder what caused it. Usually some sort of trauma has occurred, leaving behind a permanent mark. My scars are a sad reminder that my ostomy was never my choice. I endured trauma after trauma. I can tell you that the pain of surgeries and disease far outweighed the discomfort of getting a tattoo.

My second tattoo was as well planned as my first. I met Janet Paquet in 2007 at my first ostomy conference and our bond has been undeniable. The path that we have been walking since before we ever met has been profound, including numerous surgeries in our youth.

What makes it truly unique is that we share a lesser-known type of ostomy called a jejunostomy. When Janet and I said our good-byes leaving camp in 2019, our plan to get matching tattoos was set. Then COVID-19 hit and we couldn’t get together. We shared ideas on Pinterest – spoiler alert, we both have an intense love of cats. Our special day finally came this past June. A week before camp, we were finally able to live out such a fun and memorable experience.

Why do we love cats? Cats are resilient, as are we. Even after everything this disease has thrown at us we seem to always land on

REGIONAL ADMINISTRATORS Deb Carpentier (Regina, SK) – Prairie Region Réal Lamarche (Quebec City, QC) – Quebec Region Ian MacNeil (Ottawa, ON) – Ontario Region OFFICERS Chair Ann Durkee-MacIsaac (Hebron, NS) Secretary/Treasurer Stephen Maybee (Mississauga, ON) Executive Director John Hartman (Aurora, ON) – non-voting BOARD OF DIRECTORS Chair – Ann Durkee-MacIsaac (Hebron, NS) Vice-Chair – Vacant Directors Jacqueline (Jackie) Bloom (St. Thomas, ON) 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)

4 OSTOMY CANADA WINTER 2022

Dr. Shabita Teja, Naturopath and Pharmacist - BSC (PHARM), ND Lauren Wolfe NSWOC - RN, BSN, MCLSC (WH), NSWOC, CWOCN

Andrea Manson (Parksville, BC) – Pacific Region Janet Paquet (Hamilton, ON) – Ontario Region

OSTOMY CANADA MAGAZINE

Joan Peddle (Moncton, NB) – Atlantic Region

Lisa Gausman, BA, Senior Editor Julie Grzela, Assistant Editor

PILLAR ADVISORS

Janet Paquet, Assistant Editor

Sustainability – John Hartman and Stephen Maybee

Tammy Hunter, Graphic Designer

Advocacy & Government Relations –

Lorne Aronson, Advertising Manager

Ian MacNeil and Joan Peddle

French content: Réal Lamarche, translator

Engagement and Support – Deb Carpentier and Andrew Joseph (AJ) Leveille

Marketing and Communications – Stephanie Grace and Troy Curtis

OSTOMY CANADA CONNECTS John Hartman (Aurora, ON) Tiffany Shorson (Calgary, AB)

Partner and Relationship Support – Andy Manson and Randy Hull

SOCIAL MEDIA/WEBSITE Yaser Nadeem (Ottawa, ON)

MEDICAL LIFESTYLE ADVISORY COMMITTEE Karen Bruton NSWOC - RN BScN, MCICS-WH WOCC(C)

Address all Correspondence to

Dr. Zane Cohen Senior Colorectal Surgeon,

Ostomy Canada Society,

Sinai Health System - M.D., F.R.C.S.(C) Lisa Harris Registered Physiotherapist - BSCPT CAFCI MCPA

5800 Ambler Drive, Suite 210, Mississauga, ON L4W 4J4 Tel: 1-905-212-7111

Rory Hornstein Registered Dietitian - RD, BED

Toll free: 1-888-969-9698

Andrea Manson NSWOC - RN, BSN, NSWOC, NCA

Fax: 1-905-212-9002

Rose Raizman Personal Health Coach

Email: info1@ostomycanada.ca

- RN-EC PHCNP NSWOC WOCC(C) MSC MSCN

www.ostomycanada.ca­

Dr. Tim Sproule Acting Chief Plastic Surgery,

Charitable Registration No. 119277093RR0001

Scarborough Health Network - MD FRCSC

our feet. Cats have nine lives (as we do seemingly). Cats are independent, which we have learned to become. Cats are loyal and show tremendous love to those they choose to. Having a matching cat tattoo with my bestie reminds us that we are there for each other and we will always have each other’s back. Cats are loyal and accepting just like we are at camp. We look beyond the illnesses, we see and accept each other as we are. We look out for each other.

We have both lived a life of multiple surgeries leading to multiple scars and we wanted to add some beauty of our choice to our bodies. Tattoos are a matter of choice versus circumstance. For most of our lives, we were told what to do whether we wanted to or not, what to eat whether we liked that food or not, what medications to take regardless of their side effects. NOW it is my body, my choice. I spent far too long covering up (hiding) what I considered ugly reminders of my surgeries. By choosing my tattoos, I am choosing a thing of beauty, celebration and a reflection of my inner feelings.

My ostomy was never my choice. It was trauma after trauma that happened to me. The pain of surgeries and disease far outweigh the discomfort of getting a tattoo; interestingly enough, my son Wesley and I describe our tattoo experience as the feeling of deep and continual cat scratches during the process that end once the artist finishes. This is worth it because you come out at the end with a beautiful design and it’s a pain you chose, not a pain that has been inflicted on you. I have tattoos to help me carry on from difficult moments in my life. Many times, tattoos can give people a feeling of empowerment, a design that inspires and reminds them of something they have overcome.

This whole story wouldn't have been possible without Ostomy Canada and the many ways it provides support. The 2022 Step Up for Ostomy event on October 1 is an excellent example.

Ostomates across Canada gathered together for a day of friendship, food, fun, exercise and awareness. Congratulations to all who participated in making this a successful event!

We also have many sponsors to thank, many of whom advertise in Ostomy Canada. Please remember to visit our advertisers.

Many offer free samples ranging from pouches and flanges to scissors, swim barrier adhesives to shirt clips. Customer service representatives are knowledgeable and friendly people who want to help make our lives easier. They are also an essential part of the history surrounding ostomy care.

It is unbelievable to think of the humble beginnings of our organization and how many individuals have come together over the years in hopes of improving the lives of people living with an ostomy. From surgeons, nurses, ostomy manufacturers, vendors, and mostly importantly, ostomates themselves.

I hope you enjoy this historical edition surrounding Ostomy Canada’s 60th anniversary. It is a great opportunity to see how far we have come. n

Personalized Ostomy care We have a variety of ostomy brands and products.

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Pharmasave pharmacist.

Lisa Gausman, BA, Senior Editor Ostomy Canada Magazine, Administrator Ostomy Canada Youth Camp

WINTER 2022 OSTOMY CANADA 5

CHAIR’S MESSAGE

As I write this message for our Winter Magazine, we have just completed our fiscal year and held our Annual General Meeting of the National Council on September 17, 2022.

During this event we elected four new Directors: Jayne Kerr, Janet Paquet, Jacqueline Bloom and Stephanie Grace. All are energetic and enthusiastic to bring their knowledge and good-will to the table. By the time you receive my message they will have been engaged in Board activities as well as in the operational side of our society.

I am excited to announce that at our AGM I was re-elected Chair of the Board of Directors for the second year of my two-year term. I look forward to working with both new and old colleagues and together we will dedicate ourselves to fulfilling our Vision and Mission. I am particularly proud of the commitment that our directors have made to Ostomy Canada Society (OCS) in the past year as well as to the new year that we have already entered. Our Strategic Plan for 2022-2025 has been reviewed and has proven to be a major tool to follow and implement. I am delighted that our Operational end of OCS continues to be managed by our Executive Director, John Hartman, and he has succeeded in performance, fundraising, and communications, both internally and externally.

It is my hope that with the changing face of our membership that we can encourage younger people to join us. A growing organization requires the younger generation to bring a modern perspective to our conversations. We continue to strive to lead in advocacy by taking issues that impact our people living with ostomies to the level of government to improve our support.

While these are challenging times for everyone, we have continued to improve our efforts in advocacy, awareness, collaboration, and support. For example, our newly designed website, communications, publications, updated brochures, webinars, social media, fundraising, appeals, donations, and partnerships have all improved.

Our Regional Administrators, Joan Peddle, Ian MacNeil, Janet Paquet, Real Lamarche, Deb Carpentier, and Andrea Manson are front-runners in our organization and have improved our awareness and communications. With the ability to reach a broader range our country has become smaller with them on the ground level.

Congratulations to the Ostomy Youth Camp Administrator, Lisa Gausman and Coordinator, Janet Paquet who undertook the re-opening of our Youth Camp following COVID-19 closures.

They updated and re-initiated their programs, events, and facilities to fit the protocols of post- COVID. Their primary objective was to consider the care for campers, and volunteers. What a great job they did. This year’s camp was a tremendous success and was certainly due to the energy and enthusiasm put into the planning.

At our Annual General Meeting we bestowed Ostomy Canada’s awards to people who are prominent volunteers in our organization and/or in partnership with us.

• Unsung Heroes: Blanca Baquero – Ostomy Annapolis Valley/Ostomy Halifax Society, Betty Robertson – Comox 6 OSTOMY CANADA WINTER 2022

Valley Ostomy Peer Support Group, Deb Rooney – UOA Vancouver Chapter, Jo-Ann Tremblay – Medical Lifestyle Advisory Team • NSWOC Recognition Award: Denise Nicholson – Moncton Ostomy Chapter, Sheryl Walker - Regina, and District Ostomy Society • Maple Leaf Award: Ed Tummers - Ostomy Halifax Society • Chair’s Award: Ian MacNeil from Ottawa Congratulations to all.

On September 22, 2022, I was invited to speak at an NSWOCC Summit in Halifax. My presentation was ‘A Patient’s Perspective – A Need for Better Access to Care’. By sharing ‘My Journey and the lack of access to Ostomy Care’ it will open possibilities and introduce new ideas for future improvement within the healthcare system. I was given the opportunity to attend this face-to-face summit with time to provide a talk about OCS’s support programs and manage an information booth. It was a pleasure to be able to greet attendees and talk with both old and new acquaintances. Congratulations to NSWOCC on a well-planned, well-attended, and a packed agenda at this NSWOCC Summit – Supporting Sustainability.

This year we have engaged in celebrations for our 60th Anniversary with Step Up for Ostomy, Spring and Fall Appeals and a membership and volunteer drive. We are bringing Ambassadors to the fore-front in our publications, we created both an updated Visitor Program and an on-line Visitor’s training. By the time you have received this message I hope that several of our visitors have re-certified their training and/or certified new visitors.

As we celebrate our 60th year we know that our groups are also celebrating anniversaries. Have fun and reflect on the events that you have held over the years to support people living with an ostomy.

Let me close by urging you, members and future members alike, to be a part of our Society. Engage with us as we strive to raise our goals in all that we do, to serve you better and improve our support even further.

Thank you for your support over the past year, and for being part of our journey going forward.

Kind regards, Ann Durkee-MacIsaac, Chair of the Board of Directors, Ostomy Canada Society.

Au moment où je rédige ce message pour notre magazine d’hiver, nous venons tout juste de terminer notre exercice financier et avons tenu notre assemblée générale annuelle (AGA) le 17 septembre 2022.

Durant l’AGA, nous avons élu quatre nouvelles directrices : Jayne Kerr, Janet Paquet, Jacqueline Bloom et Stephanie Grace.

Dynamiques, enthousiastes et pleines de bonne volonté, elles se réjouissent à l’idée de pouvoir transmettre leurs connaissances.

Lorsque vous recevrez mon message, elles auront déjà commencé à s’impliquer dans le conseil et à prendre part aux activités opérationnelles de notre organisme.

Je suis également heureuse d’annoncer que j’ai été réélue comme présidente du conseil d’administration pour la deuxième année de mon mandat. J’ai hâte de collaborer avec les nouveaux collègues comme avec les plus anciens. Ensemble, nous travaillerons à mettre en œuvre notre vision pour accomplir notre mission. Je suis particulièrement fière de l’engagement dont les membres de la direction ont fait preuve à l’égard de la Société canadienne des personnes stomisées l’année dernière et encore cette année. Notre plan stratégique 2022-2025 a été révisé et s’est révélé être un outil crucial à mettre en œuvre. De plus, notre directeur général John Hartman continuera à assurer la gestion des opérations de la Société, ce dont je me réjouis. Il se distingue par l’excellence de son rendement, de ses campagnes de financement et de ses communications, tant à l’interne qu’à l’externe.

J’ai espoir que le vent de changement qui souffle sur notre modèle d’adhésion encouragera les jeunes à nous rejoindre. Pour stimuler sa croissance, un organisme doit tenir compte des points de vue actuels d’une génération plus jeune. Nous avons toujours à cœur de défendre les intérêts des personnes stomisées en faisant part de leurs défis à l’échelle gouvernementale, afin d’améliorer le soutien que nous leur offrons.

Même si les temps ont été durs pour tout le monde, nous sommes parvenus à poursuivre nos efforts en matière de défense des droits, de sensibilisation, de collaboration et de soutien. Voici des exemples de ce que nous avons amélioré : nos communications, publications, dépliants, webinaires, médias sociaux, campagnes de financement, appels de fonds, dons et partenariats, ainsi que notre site Web, qui s’est refait une beauté.

Nos administrateurs régionaux Joan Peddle, Ian MacNeil, Janet Paquet, Real Lamarche, Deb Carpentier et Andrea Manson jouent un rôle de premier plan au sein de notre organisme et ont su bonifier nos méthodes de sensibilisation et nos communications. Grâce à leur travail sur le terrain, ils sont en mesure d’atteindre un public de plus en plus vaste au pays.

Félicitations à l’administratrice du camp jeunesse de la Société canadienne des personnes stomisées, Lisa Gausman, et à la coordonnatrice Janet Paquet qui ont chapeauté la réouverture du camp après que nous ayons dû le fermer en raison de la pandémie.

Elles ont mis à jour les programmes et adapté les événements et les installations aux protocoles mis en place pour contrer la COVID19. Leur priorité était d’assurer le bien-être des campeurs et des bénévoles. Quel beau travail ont-elles accompli! Le camp de cette année a connu un immense succès certainement attribuable aux efforts déployés lors de sa préparation et à l’enthousiasme de l’équipe.

Durant l’AGA, nous avons aussi décerné des prix de la Société à des bénévoles qui se sont démarqués au sein de notre équipe ou chez nos partenaires.

• Héroïnes et héros méconnus : Blanca Baquero –

Ostomy Annapolis Valley/Ostomy Halifax Society, Betty Robertson – Groupe de soutien aux personnes stomisées de Comox Valley, Deb Rooney – Association locale de la UOA de Vancouver, Jo-Ann Tremblay – Comité consultatif sur la vie quotidienne et les questions médicales • Prix de reconnaissance remis aux infirmières spécialisées en plaies, stomies et continence du Canada (ISPSCC) : Denise Nicholson – Association locale de Moncton, Sheryl Walker – Regina and District Ostomy Society • Prix Maple Leaf : Ed Tummers – Ostomy Halifax Society • Prix de la présidente : Ian MacNeil d’Ottawa Félicitations à toutes et à tous.

Le 22 septembre 2022, j’ai été invitée à prendre la parole lors de la conférence des ISPSCC à Halifax. Mon exposé était intitulé « Point de vue du patient – Nécessité d’un meilleur accès aux soins ».

En présentant « My Journey and the lack of access to Ostomy Care », nous ouvrirons la voie à de nouvelles possibilités et idées en vue d’apporter des améliorations au système de santé. J’ai eu l’occasion d’assister à cette conférence en présentiel et de présenter les programmes de soutien de la Société canadienne des personnes stomisées, en plus d’avoir tenu un kiosque d’information. Je suis très heureuse d’avoir eu la chance d’accueillir les participants et de m’entretenir avec de nouvelles connaissances — et d’autres de longue date. Je tiens à féliciter les ISPSCC pour l’organisation de cette conférence très réussie et bien remplie, qui avait pour thème la pérennité du soutien.

Nous célébrons cette année le 60e anniversaire de notre organisme. J’en profite pour souligner le travail remarquable des bénévoles dans le cadre de la campagne Step Up for Ostomy, les appels de fonds qui ont lieu à l’automne et au printemps, et l’adhésion.

Cette année, nous avons aussi mis de l’avant les ambassadeurs et ambassadrices dans nos publications, avons actualisé notre programme des visiteurs et créé une formation en ligne à l’intention de ces derniers. Au moment où vous recevrez ce message, j’espère que plusieurs de nos visiteurs auront suivi une formation d’appoint ou obtenu une nouvelle certification.

En cette soixantième année, nous sommes également ravis de souligner les réalisations de nos groupes. Réjouissez-vous et repensez aux événements que vous avez organisés au fil des ans pour venir en aide aux personnes stomisées.

Pour terminer, j’invite les membres actuels et futurs à prendre part activement à notre organisme. Impliquez-vous à nos côtés.

Grâce à votre collaboration, nous atteindrons nos objectifs pour assurer un soutien encore meilleur.

Merci pour l’appui que vous nous avez manifesté durant la dernière année. Regardons ensemble vers l’avenir.

Sincères salutations, Ann Durkee-MacIsaac, Présidente du conseil d’administration Société canadienne des personnes stomisées

WINTER 2022 OSTOMY CANADA 7

EXECUTIVE DIRECTOR’S MESSAGE

Ostomy Canada Society held its Annual General Meeting (AGM) on September 17, 2022. My thoughts are that an AGM is much like the calendar date of any January 1 of any given year. That date or the days leading up to, you think about what you and your organization have accomplished, you take stock and reflect about where you are, and then you look into the future.

I am not going to list everything all of us have accomplished this past year, but don’t let me digress. Ostomy Canada has come through a good year with new programs, communication tools, webinars, an overhauled website, a national Awards program, added talented Board of Director members, improved finances, created operational committees of volunteers who are doing incredible work and rejuvenated the amazing Youth Camp to name a few. When I connect with Chapters and Groups, I am being told that they are breaking out of the COVID-19 cocoon and setting up face to face meetings, speakers, BBQs, and planning holiday parties. Groups are striving to rebuild their membership and to add new members by connecting with more people. I am also reading a ‘sense of change’ and optimism in newsletters and hearing it in meetings. All of this is to say that it has not been a bad 2021-22 but what about tomorrow’s tomorrow?

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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I pause, reflect, and feel good (but I do not sit too long on the couch of success) about where we are. I conclude that we must continue to improve and be better as a national, collaborative, partnership-based organization. We are good and yet there is still much more to do and to build upon. We may be in our 60th year, but where do we go at 61 and beyond?

We still need to embrace change. We need to look at our demographics and ensure we are investing and creating platforms that work for a slightly younger population and yet make sure not to

The past, the present and the future. That is what an AGM and a turn of the calendar year does for me. I am excited about the future and the possibilities we have in front of us and hope you are as well. abandon those who got us here. Although our past can help us look to the future, we need to let go of some of the missteps from the past and provide clear and positive suggestions on program improvements, communications, and feedback. Ah yes feedback. I hope that we offer our ideas from leadership, supporters, members, and donors. I hope we can build a cache of new volunteers locally and nationally. We may also need to look at our structures, both nationally and locally and challenge ourselves to ensure we have a wholesome succession plan and that we build for tomorrow. Are we willing to let others step up and step in? How can we convince members to become donors? How do we connect with and convince corporate partners, or foundations that we need ongoing contributions to enable us to provide the best level of support to those 70,000…80,000 or more Canadians who live with an ostomy? Will our new online visitor program be one of the paths to attract more people and provide the support individuals and their circle of support need? There are a lot of questions for sure.

The past, the present and the future. That is what an AGM and a turn of the calendar year does for me. I am excited about the future and the possibilities we have in front of us and hope you are as well.

Let me know how you feel and how we can get better in year 61 and beyond. Thank you.

John Hartman, Executive Director

john.hartman@ostomycanada.ca La Société canadienne des personnes stomisées a tenu son assemblée générale annuelle (AGA) le 17 septembre 2022. Je vois l’AGA un peu comme la toute première journée de l’année. À cette date, ou les journées qui la précèdent,

MÉSSAGE DU DIRECTEUR EXÉCUTIF

nous repensons à ce que notre organisation et nous-mêmes avons accompli, nous faisons le point et nous réfléchissons à l’avenir.

Je n’énumérerai pas les réalisations de tout un chacun durant les derniers mois, mais laissez-moi en faire un survol. La Société canadienne des personnes stomisées a passé une belle année : de nouveaux outils de communication, webinaires et programmes — comme le programme national de remise de prix — ont vu le jour, le site Web a subi une cure de rajeunissement, le conseil d’administration a accueilli des personnes talentueuses, les finances se sont améliorées, des comités opérationnels de bénévoles dévoués ont été mis sur pied

Le passé, le présent, l’avenir... L’AGA, tout comme le changement d’année, soulève chez moi ces réflexions et ces questionnements. J’anticipe avec enthousiasme la suite et toutes les possibilités qui s’offriront à nous, et j’espère qu’il en va de même pour vous.

devrons peut-être repenser nos structures et repousser nos limites afin de pouvoir élaborer un plan de relève efficace et d’assurer notre avenir. Sommes-nous prêts à mettre d’autres personnes de l’avant et à les laisser s’impliquer? Comment convaincre les membres de devenir donateurs? Comment aborder les partenaires commerciaux potentiels et les fondations, puis les convaincre que nous avons besoin de contributions continues pour soutenir adéquatement les quelque 80 000 personnes stomisées au Canada? Notre nouveau programme des visiteurs en ligne permettra-t-il d’attirer plus de gens et de leur fournir l’assistance dont leur entourage et eux-mêmes ont besoin? Beaucoup de questions restent actuellement sans réponses.

Le passé, le présent, l’avenir... L’AGA, tout comme le changement d’année, soulève chez moi ces réflexions et ces questionnements.

J’anticipe avec enthousiasme la suite et toutes les possibilités qui s’offriront à nous, et j’espère qu’il en va de même pour vous. N’hésitez pas à me faire part de votre point de vue et de vos idées pour que nous puissions façonner ensemble les prochaines années. Merci.

John Hartman, Directeur exécutif

et le formidable camp jeunesse a été actualisé, entre autres choses.

Lorsque je m’entretiens avec les différents groupes et associations, je vois que la vie a repris son cours après la levée des restrictions liées à la COVID-19 : les membres se réunissent en personne, reçoivent des conférenciers et organisent des barbecues et des fêtes de fin d’année.

Les groupes sont impatients de pouvoir bénéficier à nouveau de l’abonnement et d’accueillir de nouveaux membres en élargissant leurs horizons. Je perçois également une volonté de changement et un optimisme quand je lis les infolettres et quand j’assiste à des réunions. Tout cela pour dire que l’exercice 2021–2022 s’est somme toute bien déroulé. Mais qu’en sera-t-il de l’avenir?

Lorsque je prends le temps de m’arrêter et de réfléchir, je suis fier de constater où nous en sommes. Toutefois, je ne le tiens pas pour acquis. J’en conclus que nous devons continuer à nous améliorer en tant qu’organisation nationale fondée sur la collaboration et les partenariats. Nous sommes sur la bonne voie, mais il y a encore tant à faire! Alors que nous soulignons aujourd’hui nos 60 ans, réfléchissons à la direction que nous souhaitons prendre durant la 61e année et les suivantes.

Nous devons continuer d’aspirer au changement. Il nous faut examiner la démographie et investir dans des plateformes qui répondront aux besoins d’une génération légèrement plus jeune, sans laisser de côté les membres actuels et de longue date. Le passé peut certes nous aider à envisager le futur. Cependant, nous devons oublier certains de nos revers et formuler des suggestions claires et positives pour améliorer nos programmes et nos communications, en plus d’émettre des commentaires constructifs. C’est important. J’ai espoir que nous pourrons bien transmettre notre message aux leaders, sympathisants, membres et donateurs. Que nous pourrons bâtir un réseau de nouveaux bénévoles à l’échelle locale et nationale. Nous

john.hartman@ostomycanada.ca

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WINTER 2022 OSTOMY CANADA 9

NSWOCC PRESIDENT’S MESSAGE The NSWOCC Board of Directors is pleased to announce the appointment of Marcia Leard, RN, BScN, NSWOC, WOCC(C) of Summerside, Prince Edward Island, as the President of Nurses Specialized in Wound, Ostomy and Continence Canada (NSWOCC). After being a member of NSWOCC for two decades, serving for two terms as the NSWOCC Atlantic Regional Director and volunteering on the National Conference planning committee and various projects within the association, Marcia is well prepared to undertake this key leadership role.

Hello everyone! My name is Marcia Leard and I am the new President of Nurses Specialized in Wound, Ostomy and Continence Canada (NSWOCCs). I have been a Registered Nurse for over 30 years and a Nurse Specialized in Wound, Ostomy and Continence (NSWOC) since 2004. I live and work in Summerside, Prince Edward Island, where I see a diverse patient population with diverse wound, ostomy and continence issues.

It is a challenging time to be a nurse, and it is a challenging time to be a patient, especially if you need to access more specialized care such as ostomy care. On September 22, a Nova Scotia Wound/ Ostomy/Continence Summit will have taken place in Halifax.

Attending will be Nova Scotia NSWOCs, government leadership, health authority leadership, Academia, industry and local ostomy chapter representatives and Ann Durkee-MacIsaac of Ostomy Canada. This summit was the result of a request and some funding from a patient as well as other funding support from industry partners. There were reports of people living with an ostomy having to drive three to four hours to see an NSWOC and to receive the specialist care required for an ostomy complication. That drive is too far and too long. Hopefully this summit will reinforce with health leadership that the need for specialist care is crucial for patients with an ostomy. More NSWOC’s mean improved access to this specialized care for the people who need it and serves as an example to other provinces that these discussions need to happen.

In August, the NSWOCC launched the Sharing Circle website which aims to help patients, NSWOCC’ and other healthcare professionals access appropriate education, resources, and supports related to Indigenous WOC health. The three ostomy teaching tools developed by the NSWOCC and the National Practice Standards for NSWOCC are included in these resources as well as a connection to the “Find an NSWOC” feature. Appropriate standards of care need to be met in indigenous communities as well as in the rest of Canada.

We are excited to announce that the following article has been published in the Canadian Journal of Surgery: “Preoperative stoma site marking for fecal diversions (ileostomy and colostomy): position statement of the Canadian Society of Colon and Rectal Surgeons and Nurses specialized in Wound, Ostomy and Continence Canada”. (Can J Surg 2022 May 5; 65(3). Doi: 10.1503/cjs.022320).

This paper, which has national exposure to surgeons, was written 10 OSTOMY CANADA WINTER 2022

by team members who developed the Canadian position statement on preoperative stoma site marking for fecal diversions (ileostomy and colostomy) in order to improve preoperative stoma site marking. It is a patientcentered, evidence-based tool developed to assist clinicians with preoperative stoma site marking. In addition to the position statement, there is an enabler document and video to provide guidance for stoma site marking in both elective and emergency settings, which should be used by surgeons and NSWOCs to identify the optimal stoma site preoperatively. The preoperative stoma site marking position statement, enabler and video can be found at www.nswoc.ca, and you can email office@nswoc.ca if you would like to obtain a copy of this published paper.

The NSWOCC is still working with Ostomy Canada Society to make changes to the Disability Tax Credit forms and continues its efforts to have NSWOCs be made certifiers. Improved access to these benefits is extremely important for so many patients with ostomies.

Wishing you all a wonderful winter and 2023!

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

Lieutenant Governor of PEI Awards Newly Appointed NSWOCC President Marcia Leard, RN, BScN, NSWOC, WOCC(C) the COVID Warrior Coin Award The COVID Warrior Coin Award was presented by The Honourable Antoinette Perry, Lieutenant Governor of Prince Edward Island (PEI), to Marcia for her efforts to aid the COVID-19 response in the province.

The COVID Warrior Coin was commissioned by Dr. Trevor Jain to recognize the leadership, initiative and hard work of multiple Islanders and organizations who have gone above and beyond during this ongoing response. By collectively working together, Marcia, along with many other Islanders, have stepped up to the plate and given of themselves to enrich the lives of others by doing outstanding acts of goodwill by using their knowledge, expertise and abilities to assist in keeping Islanders safe and well.

"Her Honour feels especially privileged to be a part of this recognition program and to present these awards. She is extremely proud of the contributions of our citizens."

Please join us in congratulating Marcia on this award!

Marcia Leard receives the COVID Warrior Coin Award from The Honourable Antoinette Perry, Lieutenant Governor of Prince Edward Island

YES, I WANT TO BECOME AN OSTOMY SUPPORTER. Your donation means the world to our ostomy community.

Thank you.

Online donations at www.ostomycanada.ca/donation-page

q I am enclosing a cheque payable to Ostomy Canada Society. q Please charge my: q Visa q MasterCard q Amex Credit Card No.:______________________________________________________________________ Expiry Date:__________ /____________

Donations of $25 or more will receive: > a subscription to Ostomy Canada magazine (published 2 times a year). > electronic newsletter, Ostomy Canada Connects (published 4 times a year).

Name as on credit card:________________________________________________________________ Signature:___________________________________________________________________________ Address: ____________________________________________________________________________ City: _________________________________ Province: ________ Postal Code: __________________ Telephone: __________________________________________________________________________ Email: ______________________________________________________________________________ Do you have a: q Colostomy q Ileostomy q Urostomy Age group: q Under 20

q 21 to 40

Donations received by mail, or by telephone/fax > Mail the completed form and cheque, if applicable, to the address below. > Due to administrative handling costs, tax receipts will be mailed only for donations of $25.00 or more.

q Other? ___________________________

q 41 to 60 q Over 60

q Yes, I would like to receive email communications from Ostomy Canada. I understand that I can withdraw my consent at any time.

Online donations are receipted at the time the donation is made.

Ostomy Canada Society, 5800 Ambler Dr., Suite 210, Mississauga, ON L4W 4J4 • Phone: 905-212-7111 • Fax: 905-212-9002 Toll Free: 1 888-969-9698 • Email: info1@ostomycanada.ca • Charitable Registration No. 119277093RR0001

UOAA PRESIDENT’S MESSAGE

Greetings Friends, It’s always a pleasure to share a bit of what is happening here at UOAA with all of you.

My leadership of UOAA ends this year and I’ve been reflecting on my personal ostomy journey that began in April of 2005 when I was diagnosed with colorectal cancer, which necessitated surgery for a permanent colostomy. I have found comfort and encouragement from attending my local UOAA Affiliated Support Group meetings ever since.

In the summer of 2009 I attended a life-changing event, my first UOAA National Conference held in New Orleans, Louisiana.

I was motivated to get involved in the organization and in 2010 ran for a Directorship at the National Level. Here I am, twelve years later ending my term as President. What a ride!

After several delays due to the pandemic, our 8th UOAA National Conference is back on and will be held in Houston, Texas August, 10-12, 2023. We’ve missed our Canadian friends and I hope you’ll be able to come down and join us. Houston is home to several world-renowned medical centers. We have sourced expert speakers who will be on hand to answer your questions. In addition to the great educational sessions and ostomy product exhibit hall, we hope to make it a fun social gathering for all. Houston is an international city with a lot to do. Our hotel, the Royal Sonesta, is in the heart of the Galleria shopping and dining area that is kept cool all summer long. Registration opens in January 2023 so feel free to make those travel plans.

I’m happy to share a number of noteworthy recent developments as well. Our Education Committee has completed new surgery-specific guidebooks (ileostomy and colostomy, urostomy to follow soon) that are available for free on our website, ostomy.org.

Also available online we have compiled new washroom self-advocacy resources. Included is a new Restroom Access Communication Card, info on the “We Can’t Wait” app and UOAA guidelines to promote the creation of more ostomy friendly washrooms.

UOAA Advocacy leaders are very pleased to have their first ever research project published in the Journal of Wound Ostomy Continence Nursing. It highlights the need for our Ostomy and Continent Diversion Patient Bill of Rights to be implemented in all healthcare settings for the best possible patient outcomes.

Recognizing the need for more certified ostomy nurses, UOAA established an annual Scholarship Fund to assist nurses in getting their Ostomy Care Certification.

In the year ahead we also hope to launch new programs to connect ostomates virtually and, also to provide more education and resources to pediatric patients and their families. All of these efforts would not be possible without our committed volunteers and supporters.

On January 1st, the Presidency will pass into the capable hands of Cheryl Ory. It is my wish that I leave the UOAA in as good shape as my predecessor left it to me.

See you in Houston next August.

Jim Murray President, UOAA (United Ostomy Associations of America)

12 OSTOMY CANADA WINTER 2022

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ASK A NSWOC

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

Q

I am 72 years old and have lost my true love. I was dedicated to my spouse for 40 years and now am so lonely. I have no children. I live on my own. I have a brother who lives two blocks away but who rarely goes out. I have had a colostomy for the last 25 years and am comfortable with all that it brings. I have been very fortunate in having minimal issues with my stoma. What can I do to not be so lonely? ~George

A

George, it seems like you have extra time on your hands and are reaching out looking for community involvement to enrich your life. Volunteerism brings a sense of purpose in your life and it’s fun! It improves self-esteem and enhances your social skills with others. AND it is a great avenue for increasing your circle of friends!

You have a wealth of knowledge and experience in having a colostomy for 25 years that could greatly benefit others who are in need of learning to live with an ostomy and its issues! Ostomy Canada is a volunteer organization that would find significant value from your experience. It depends on how comfortable you feel. The time you give in volunteering is your choice. It may be a few hours a month to several hours a month. There are many areas to volunteer in: Visitors Program, marketing, social media support, or even as a board member! Start with a simple role which does not take up a lot of time and gauge your interest and time from there. https://www. ostomycanada.ca/volunteer-with-us/# There are also local chapters or peer support groups which can be found on the Ostomy Canada website. https://www.ostomycanada. ca/find-a-chapter-peer-support-group/. Feel free to contact a local group to find out what is available.

WHAT IS VOLUNTEERING? Volunteering is the time you give to strengthen your community and improve others’ quality of life as well as your own. There are so many ways to be involved in the community that:  > Speak to your passion  > Suit your personality  > Meet your interests  > Build on your experiences  > Fit into your lifestyle  > Contribute to your health and well-being Government of Canada https://www.canada.ca/en/employment-socialdevelopment/corporate/seniors/forum/volunteer.html

14 OSTOMY CANADA WINTER 2022

Q

I have had an ileostomy for six months. This is a temporary one until my large colon heals. Being 25 years old I am active and work full time. It has been very difficult in changing my appliance every five days as the stoma never stops putting out semi-formed stool! I am thankful to not have leaks. What can I do to make the changes easier? ~Gwen

A

Gwen, people with ileostomies are unable to control their bowel movements which can be frustrating when changing an appliance. The best time is first thing in the morning prior to having breakfast or any fluids. Have your supplies ready including a flange that has been cut to the size of your stoma. Prepare a small container of warm water and place a facecloth near you to use to clean your stoma.

Gently but firmly press around your stoma to express any effluent that might be sitting just under the surface. Then remove the flange and proceed to clean and dry the area. There should be a minimal amount or no effluent. It is okay to remove the flange and take a shower prior to applying a new flange. This will remove bacteria, leftover paste or debris. You will gain expertise and speediness over time.

Q

I am having an argument with a friend and we both have colostomies. We are arguing about the frequency for emptying the bag and changing the pouch. ~ Brad

A

Brad, it depends on what and how much you eat that day.

Everybody is so different. It is suggested that once the pouch reaches one-third or half full then it should be emptied. If you have leakage issues, it could be caused by the bag being pulled downwards from the weight of the stool. If so, then the pouch should be emptied sooner.

Changing the pouch is different for each person. It is suggested to change the pouch every three to five days. The manufacturer suggests the pouch is good for a total of seven days. If you want to change it daily or every other day that is not a problem. My suggestion is to use a pouch for several days then place a clean pouch on. Wash the current pouch and hang to dry. Rotating pouches will be cost effective, reduce environmental waste and still work well.

Most pouches have odour barrier film.

Q

My rectum and most of my large colon have been removed due to cancer. The rectum is sutured closed. I have a permanent ileostomy. It has been five days since my surgery and I feel as though I need to push for a bowel movement and that area is so painful. ~ May

May, this procedure is called a proctocolectomy. It is quite normal to feel as though you have to have a bowel movement. It is called phantom rectum. It is just like the phantom pain people feel when they lose a limb.

Initially it is important to use an off-loading pillow so that the small capillaries do not close off which reduces blood flow. Speak to an occupational therapist, home care or a medical specialty store to assist you to find the proper pillow. Sit side to side and reposition yourself frequently. n

A

May, this procedure is called a proctocolectomy. It is quite normal to feel as though you have to have a bowel movement. It is called phantom rectum. It is just like the phantom pain people feel when they lose a limb. Over time the pain will diminish although some people may have pain for years.

It is important to contact your health provider if the incision breaks open or if the incision line becomes fragile, inflamed and/or has any discharge. It can be a hard area to heal as it is between the buttocks which creates a warm moist environment. Place a small piece of gauze loosely between the buttocks to keep the area open and to reduce moisture. Ensure it is loose so it does not cause pressure. It may be up to six weeks before it is fully healed depending on your past history.

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The Step Up for Ostomy event was held on Saturday, October 1, 2022 across Canada.

S & C CURRIE PHOTOGRAPHY

CALGARY OSTOMY SOCIETY

Calgary Ostomy Society held a large event that included an awareness walk, BBQ and Ostomy Expo, with about 75 people in attendance. Special thanks to our local sponsor CB Medical, and the donors who helped us raise $3175 in support of the Ostomy Canada Society. We would also like to thank everyone who volunteered to make this event a success, including the Ostomy Youth Campers Oliver, Mady, Noel and Emily; and photographer Sean Currie for his contribution to the Step Up for Ostomy YouTube Recap video.

Noel Young of Calgary, camp graduate 2022

MONCTON & DISTRICT OSTOMY ASSOCIATION - We had a beauREGINA & DISTRICT OSTOMY ASSOCIATION - The Step Up

fundraiser was a great opportunity for us to get together. We are grateful to those who donated to our national organization. This will allow both Ostomy Canada and our local groups to continue to provide support to those who have an ostomy through various incentives. Regina Ostomy is so fortunate to have community sponsors who continue to support our group. Our Step Up walk, I’m very happy to report was a great success! 35 people and a veritable pack of dogs.

16 OSTOMY CANADA WINTER 2022

tiful day with a good turnout for the day. We raised $1810.00 and were happy to be able to Step Up for Ostomy.

OTTAWA OSTOMY SUPPORT GROUP

We ended up raising about $1300 – thank you to everyone who came out and contributed. I met some new members, and their dogs, and enjoyed the sandwiches that Gerda ordered and Eileen brought.

UNITED OSTOMY ASSOCIATION – VANCOUVER CHAPTER

Thank you to everyone who came to LaFarge Lake for our 4th Annual Step Up for Ostomy Walk! (previously called the Stoma Stroll) The weather held and an estimated 35 walkers (and six dogs) came to enjoy a leisurely walk around the lake with croissant sandwiches after. Thanks to our sponsors, Life Care Ostomy for organizing the event plus treats and beverages, and to Hollister for the T-shirts. See you next year!

Richard Olley of Halton-Peel Ostomy Canada Society (OCS) is 60 this year! And it's 31 years since my life-preserving ostomy surgery. Adjusting to life with an ostomy is a physical and emotional challenge. OCS is a strong supporter of and advocate for people living with an ostomy. Peer support and nursing support is vital. Overcoming the stigma of having ‘the bag’ is a work in progress.

OCS is focused on all of these things.

I hope to play 60 holes at Oakville Golf Club on October first. It will be quite a challenge with only 12 hours of daylight and other golfers on the course! But it will be a breeze compared with the challenges many face after ostomy surgery.

If I am going to reach my goal I need $1/hole from 100 friends, family, acquaintances and colleagues. (Yes and I need to complete 60 holes!). Please help if you can. Post event update - I finished just a couple over bogey golf not bad for a tired old man! Stepping Up with Success!

OSTOMY TORONTO

As part of Ostomy Toronto’s support of the national Step Up for Ostomy program and in partnership with original Riderz Motorcycle Riding Club, they held their first annual ostomy awareness charity ride. The group had a wonderful day and helped raise $725.00. This was Ostomy Toronto’s first year doing this event and it was a lot of fun.

They rode through a scenic part of Ontario to Mount Forest and back, followed by a group BBQ. Next year they plan to make it a much bigger ride and hope to have a few more fellow ostomates join us for event. n

Richard completes 60 holes of golf for Step Up for Ostomy Day

WINTER 2022 OSTOMY CANADA 17

Hollister Secure Start Services Hollister Secure Start Services Hollister Secure Start Services provides a lifetime of customized support for people in the ostomy and continence care communities.

We are proud to offer dedicated support for each and every patient along the continuum of care!

Once enrolled, a Hollister Secure Start Services Coordinator will call to explain our services, answer any questions, and provide ongoing support.

A Hollister Secure Start Services Coordinator can assist with the following: • • • • •

Finding the right products Providing product information and condition-specific education Finding local resources like retailers and clinicians Product usage care tips Finding reimbursement for your catheter products

Ostomy Care

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To learn more about Hollister Secure Start Services, for Ostomy, call us at 1.866.789.7574, or email us at securestartcanada@hollister.com.

For Continence, call us at 1.800.263.7421, or email us at canadassscccontact@hollister.com.

Making a difference in the journey of life.

WOC NURSES TAKE PART IN WORLDWIDE Virtual Ostomy 5k October 1, 2022 Wound, Ostomy, and Continence (WOC) nurses from Los Angeles, Stoma Stars and unit manager from a Colorectal Surgical floor along with their family members (both human and fur friends) joined together to celebrate Ostomy Awareness Day by participating in the Worldwide Virtual Ostomy 5k. This is an annual event hosted by the United Ostomy Associations of America (UOAA), a nonprofit organization dedicated to supporting, empowering, and advocating for people who have had or will have ostomy or continent diversion surgery. We named our team, “Stoma Stars of Hollywood”. We made our way up to the Hollywood sign for a morning hike to help raise ostomy awareness. This is the first year that WOC Nurses and nurses from the Colorectal Surgical floor collaborated to raise ostomy awareness to the public. “Stoma Stars” are staff nurses who serve as ostomy champions for the hospital. These nurses went to a four-hour class organized by WOC nurses. The class covered many topics related to ostomy such as types of ostomies, surgeries, ostomy pouches and accessories, peristomal complications, diet and hydration, lifestyle, and home health. A hands-on skills lab on ostomy care was also incorporated at the end of the class. “Stoma Stars” currently serve as unit and house-wide resources for ostomy care. There are a total of 16 “Stoma Stars” to cover both day and night shifts. n Chutiwan lives in Los Angeles, CA, USA and has been a contributing author to Ostomy Canada

Paula: I Wouldn't Change my Ostomy for the World Meet Coloplast ambassador 20-year-old Paula Sojo! With a TikTok audience of over 185,000, Paula is a digital influencer spreading awareness about chronic illness with videos about her life with an ileostomy. Here’s her story: “If I could go back in time, I would sit in that hospital bed with my 18-yearold self and tell her everything would be okay and that we’d make it out on the other side.

I got sick in March 2021 with severe perianal Crohn’s disease. I’ve always known my body well, so when I first recognized the new symptoms, I knew I needed immediate help. It took months of multiple doctors and ER visits, with no helpful answers, for my health to completely deteriorate.

I spent over 200 nights in the hospital and had 14 surgeries that year. Sepsis after sepsis, drainage after drainage, I was quite literally dying. After my fourth surgery, the word ‘ostomy’ started to be tossed around, and so having to wear a bag of my own poop moved up on my list of biggest fears.

My biggest nightmare turned into reality in April of 2021. I was told that if I didn’t have the ileostomy surgery, I probably wouldn’t make it through the night.

Everything about my new reality terrified me. I was depressed, grieving my old body and life, and at the same time, trying to navigate living with this new ostomy.

There were moments when I so badly wanted to give up; but I didn’t.

One day, I woke up and the fog started to clear. My mom, who has been my greatest supporter and motivator through this whole journey, sat at my bedside and told me: “You can either tire yourself out by trying to hide and be ashamed, or you can show the world who you really are and move on with your life.”

I remember so desperately that night before my surgery needing someone to turn to to reassure me that I could still live a normal life. I knew there had to be many other people in the same boat.

So, I picked up my phone, and posted a TikTok - a 12 second video that I didn’t think would result in anything. Then, comments started flooding in from girls my age who also had ostomies. I turned to my mom and said, “I knew I wasn’t the only one!”

Coloplast has been the main reason I’m able to stay so confident.

The pouches have helped me shift my mind set into thinking my bag is an accessory rather than just a medical device.

I thought my life ended when I first got my ostomy, but I was so wrong; it was just beginning.” n Follow Paula on TikTok and Instagram @paulasojoro!

Note: This article was submitted by Coloplast Canada as part of their Gold level sponsorship support of the 2022 Step up for Ostomy Program.

20 OSTOMY CANADA WINTER 2022

Joel Jacobson 1940-2022

Joel, of Halifax Nova Scotia passed away peacefully on August 18, 2022. He was 81. Joel is survived by his loving wife Cathy, son Jason and daughter-in-law Jessica, daughter Debra and son-in -law Ian Mattingley, and four grandchildren: Samantha and Kyle Jacobson and Olivia and AJ Mattingley. He will be remembered and missed by many in Nova Scotia, and across Canada.

Joel earned a Bachelor of Commerce degree at Dalhousie University and a Master of Science in Journalism at Boston University. Joel joined the Halifax Herald Limited in 1984. He worked as a sportswriter, City Hall reporter, editorial writer, and business editor before beginning the very popular Bright Spot column in 1992, of which he wrote 2,339 stories of everyday people. In 2001, he started a Sunday Great Kids column, writing another 300plus articles about wonderful young people in Nova Scotia. Joel retired from the Herald in March 2009 but continued to work as a freelance writer, speaker and emcee until his passing. Open and genuine, rarely speaking a bad word about anyone or anything, he lightened a room when he walked in with his smile, glad hand and a kind word. An avid sports fan, he was devoted to the New York Yankees and would watch or listen to almost any athletic event. He had a positive outlook on life, using that, plus a constant smile and corny jokes, to overcome colorectal cancer and live happily with an ileostomy.

Joel is an outstanding example of a life well lived; much of it in service to others. Both before and after he had ostomy surgery he volunteered with many organizations, including Nova Scotia Special Olympics, Beth Israel Synagogue, Nova Scotia Sport Hall of Fame, Nova Scotia Rehabilitation Centre

Foundation, and of course Ostomy Canada Society. His dedication was acknowledged by his receiving many awards, including Nova Scotia Sport Hall of fame Volunteer of the Year Award (twice!), Easter Seals March of Time National Award, Peter Gzowski Literacy Award of Merit, and the Burleigh Wile Outstanding Service Award from the Halifax Chapter of Ostomy Canada Society. For a complete list of the organizations Joel was involved with, and the awards he received, see the October issue of Connects, available on the Ostomy Canada Society website (www.ostomycanada.ca ) Ostomy Canada Society greatly benefited from Joel’s volunteerism, his energy, his sense of humour and his journalistic skills. On the local level, he was an active supporter of the Halifax chapter. On the national level, Joel served as a member of the Board of Directors.

For many years, he was editor of the Society newsletter, originally called the Connection, and now Ostomy Canada Connects. He also contributed many articles to Ostomy Canada magazine. He worked on the organizing committees for the 2002 national conference held in Halifax, Halifax Chapter 35th anniversary celebration, and 2009 World Ostomy Day. For several years, he served as master of ceremonies at the closing banquets of Ostomy Canada conferences, bringing the gift of laughter to attendees.

He was a proud and vocal supporter of sending youth to ostomy camp. In 2016, Joel was awarded Ostomy Canada Society’s prestigious Maple Leaf Award.

Ostomy Canada is stronger from having had Joel as a supporter and contributor. Our sympathy is extended to his family. n WINTER 2022 OSTOMY CANADA 21

Ostomy Canada

YOUTH

CAMP

22 OSTOMY CANADA WINTER 2022

Ostomy Canada Youth Camp Fundraiser

by Kevin Taziar

On May 28, the Halton-Peel Ostomy support group held what we hope to be our first annual golf tournament at Oakville Executive Golf Club. We played the Angels View 9-hole course. We had a great day with 18 golfers and three supporters taking part. Every golfer received a reusable water bottle courtesy of Coloplast.

We had six hole sponsors: Coloplast, Hollister, Safe n Simple, Adjust to Home, Brant Arts and Wellwise.

We held contests throughout the day: longest drive was won by Rose Jacobs, closest to the pin on hole # 2 was won by John Hartman, closest to the pin on hole # 5 was won by Doran Pettijohn, most honest golfer was won by Richard Hildebrand and the lowest score was won by Richard Olley, Pam Olley and Ronan Corr. Afterward we had a raffle draw with donated prizes making it so that almost every golfer received something at the end of the game. Thank you John Hilderand, Hollister and Coloplast for the generous donation of prizes.

After everything was said and done we had a net profit of $1,683. With the money raised, we have enough to pay for the registration and the flights for one child, so that they can enjoy a great ostomy youth camp experience.

This was a great effort by all the participants and the organizers, and we are already in the pre- planning stages to create an even better and bigger tournament for next year. We hope to have all the holes sponsored and are aiming for 32 to 40 golfers to participate. With any luck, maybe we can sponsor two children, and enhance more lives with a great ostomy youth camp experience.

A special thank you goes out to Nancy Plume for all of her hard work with the printing and signs, Richard Olley for organizing the golfing and the meals, Kevin Taziar for the hole sponsors and overall planning and Steve Maybee for the financial collecting and for tallying the funds. A special thank you to Lisa Gausman and Janet Paquet, for their encouragement of fund-raising activities and for their ongoing hard work to help make so many youths’ lives better. n Left to right are Richard Olley, Kevin Taziar, Nancy Plume, Pam Olley, John Hartman and Steve Maybee in the back

WINTER 2022 OSTOMY CANADA 23

Camp Came Back

by Janet Paquet On the final day of camp, July 12 2019, as

we were dropping kids off at the airport or seeing them picked up at Easter Seals Camp Horizon by their parents, we never dreamed that it would be nearly three years before we’d see our campers in person again.

When the COVID-19 pandemic forced the cancellation of the 2020 and 2021 camps, we were all devastated but understood the importance of keeping our campers and our volunteers safe and healthy. Our camp committee brainstormed ideas on how to keep our campers engaged while struggling with shutdowns and ever-changing health regulations. Each province had their own rules and mandates and keeping up with all the regulations was challenging. To keep our campers engaged, we started presenting online gatherings using the Zoom platform. Many of our campers, our camp committee and camp NSWOC nurses eagerly attended. To make it fun we encouraged themes like wacky hat/hair, wear a camp t-shirt and silly dressup. While the gatherings were primarily to stay in touch and catch up with our campers, we also discussed serious topics like how the pandemic was affecting everyone. We shared useful coping strategies for the stress of being in lockdown and away from our peers. We ended these meetings by singing some of our favourite camp songs.

Fast forward to the Spring of 2022. Although the pandemic was still ongoing, mandates were slowly being lifted and Easter Seals decided that they would run camp at a 75% capacity but we all would need to adhere to restrictions. This meant that camp would be shortened by one day to allow for a thorough cleaning between partner groups and all campers and volunteers would be required to have a minimum of two doses of the COVID-19 vaccine. If any of our campers showed symptoms of the virus and tested positive, they would have to be quarantined and then be picked up by a parent or guardian immediately. This particular restriction posed a serious problem as 80% of our campers fly into Calgary to attend camp.

Despite all of the imposed restrictions, the camp committee presented a plan to Ostomy Canada’s Board of Directors that would keep our campers and volunteers safe and recommended that the board approve and give the go ahead for camp to happen in July 2022.

Yay! The Board of Directors voted to allow Ostomy Camp 2022 to go ahead, with the restrictions.

Now, the real work began. In terms of logistics, we had 22 campers who were flying into Calgary from across the country.

We needed all the flights to arrive by 9 am in order to make the camp bus on time. Thankfully with the help of Sandra Morris of the Vancouver chapter, who researched all the flight times, we were able to get all but one of our campers to the airport within our required time frame.

We also needed a way to recognize our campers at the airport.

As you can imagine, after almost three years of not seeing our 24 OSTOMY CANADA WINTER 2022

campers, many have gone through growth spurts and physical changes plus all would be wearing masks.

Fortunately, Nightingale Medical in Vancouver also wanted to help make camp 2022 a success. They offered to sponsor bright turquoise t-shirts that our campers and volunteers would wear on the first day. In these shirts, our campers and volunteers were very visible and easy to identify at the airport. A lot of stress was alleviated. The shirts had a camp motif on the front with the Nightingale logo on the sleeve. Keeping within the ostomy community, the t-shirts were produced in Hamilton by ‘The Set Collections’, a business run by Marina and Marissa Settimi, two members of Ostomy Hamilton. We are grateful for the partnership with Nightingale Medical and The Set Collection and look forward to working with them again next year.

Our week at camp was fabulous. In early July the weather in the foothills of the Rocky Mountains can be unpredictable. This year we only had one day of drizzle and the rest of the week was sunny and warm. Calgary Ostomy Society member, Sean Currie (who is also the unofficial photographer for Calgary Ostomy Society and Youth camp) arranged to have the Redwood Meadows Volunteer firefighters bring two firetrucks out to camp. The pumper truck provided enough water for an epic water fight. Firefighters, volunteers, staff and campers chased each other with water guns, water buckets and fire hoses.

Other camp activities included the camper favourite, the Giant Swing. This swing takes you as high as a telephone pole where you then let yourself go, essentially making you into a human pendulum. Our campers were incredibly excited to do this activity again and even managed to drag/bribe/encourage Camp Administrator Lisa onto it. The climbing wall, archery, campfires and a hike at nearby Elbow Falls were also familiar favourites for our campers.

Our three NSWOCs were kept busy providing education on ostomy products for our campers and each camper received a private ostomy assessment. Magic circle is also a meaningful time where our campers share their ostomy/health journey with each other. It is a chance for our campers to express their feelings and ideas in a safe environment with no judgement or fear. Our older teens also have the opportunity to come together in a separate session and talk about dating and intimacy issues with an ostomy.

One of the best things about being a volunteer at the Ostomy Canada Youth Camp is the relationship we develop with our other volunteers and our campers. As we mentor these kids, a special bond is created. We become like big brothers and sisters. Over the years the bond we have with our campers grows and the bond the kids have with their fellow campers also grows as lifelong friendships develop. It truly is a magical place! n Janet is the Ostomy Canada Youth Camp Coordinator and Co-President of the Hamilton & District Ostomy Association

First Time Volunteer at Camp Horizon

by Chris Brandt I was finally able to volunteer at the

Ostomy Canada Youth Camp held at the Easter Seals Camp Horizon this past July. This is something I have wanted to do for some time but it never seemed to work out. I was asked to write about why I wanted to do it and what it meant to me. I don’t see it as an advertisement for volunteering but taking a deeper look at what we go through and why we give back.

I was diagnosed in late 2013 with severe ulcerative colitis. My sickness really only lasted six months; I went from being healthy to losing 50lbs and being barely able to function. None of the usual or top rated drugs helped so I had to have surgery. This was followed by a couple of years of surgeries to get me to where I am today with a J-pouch. During this time, I sought support through Facebook to meet others who are going through or have gone through similar ailments. This was when I met Lisa Gausman. I saw the work she did with this camp and I thought this was something I needed to participate in.

After a couple of false starts and a pandemic, I was finally able to work it out to volunteer. Up to this point my support was fully

through donations, which is important and necessary, but I really wanted to spend some time with the kids. I was around 40 years old when I went through my illness and surgeries and it hurt my heart to know that there are kids who have to deal with this sickness. I felt that it was really important for me to spend time with them, to show them that there are real opportunities to do what everyone else does.

I always suspected that volunteering at this camp would change me in some way. I was not prepared fully for how much it actually did. I spent the week coming each day to help and spend time with the kids. Within a couple of days, I was greeted with love and happiness from the campers and I absolutely loved doing the activities with them. To hear the laughter and to see the support for each other, touched me very deeply. There are no hurdles or walls for them, they just concentrate on living. This really is a lesson for those suffering or not suffering. They touched my heart in ways that I could never fully explain. I will try to coordinate my time to do this again. It may be a bit selfish as the happiness and admiration I had for everyone involved lifted my own spirits. But if I can help make their time better in any way, it is a good thing. n Chris lives in Calgary, AB

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Camp Letters July 2022 Emails of gratitude to the Youth Camp Committee shared with parental permission I just wanted to drop you a note to thank you for everything you (and

the others) did to make our daughter’s experience at camp this year so incredible. We were all feeling very apprehensive about her going especially given the last few months of difficulties with her cecostomy.

Several times she asked me if I thought she should still go...

When she called me from camp during her routines, she sounded happy. It went so well; she didn’t experience any sickness like she has been having! Her spirits have been lifted by the other kids she met there and she is feeling connected with them. At one point she even said the words, “I’m feeling better about my ostomy”. Given the trauma she’s had over the last few months, I was really quite surprised to hear her say that.

I am so very thankful for this camp and what it has meant for Nikki. She seems renewed, refreshed and so much happier than when she left. We don’t know what the future holds with her current cecostomy and what other changes she might need to make in the coming months. But this camp experience has given her the strength and motivation to carry on. I think it’s really attributable to all of the incredible people at the camp (leaders and campers) that made it so special. Thank you again for making this possible for all the campers.

Warm (and very grateful!) regards to you all. ~Kim K Macy is so wanting to connect to other peers to create a bond that

will last throughout the year as we come from a very small town, so I am encouraged that a camp like this even exists! Thank you so much for sending the video and photos of Macy from camp last week. To say that she had an incredible time is absolutely an understatement! We knew she would make the life changing connections that she has been longing for, but to actually see the change in her spirit is overwhelming as a parent. Thank you for being the catalyst for allowing these children to come together, what you are providing to all of our families is truly remarkable. And thank you for the comfort you granted to my husband and I by answering our emails. It was the first time we had ever been apart from Macy and we struggled throughout the week. Victories all around! We hope to see you again next year! Macy is counting down the days. ~ Christa M Letters from campers reprinted with permission from Vancouver Ostomy ‘Highlife” Sept/Oct 2022 After a three-year hiatus, it was really nice to be able

to meet up with other campers who I had met in the past but I was also happy to have the opportunity 26 OSTOMY CANADA WINTER 2022

to meet new campers and staff. Being at Ostomy Camp, I knew that pretty much everyone would be understanding as far as health challenges were concerned. Camp gave me a kind of psychological freedom that just wouldn’t be possible at a regular summer camp.

We had two water fights which more than made up for the lack of pool (the pool has been closed due to cracks in the cement). I particularly enjoyed the three-sided rock climbing wall and appreciated that one side was designated as ‘easy’ as it was the only one I could conquer. The cabin-wide games were lots of fun but very exhausting!

Our camp experience would not be complete without the camp t-shirts we got to custom tie-dye.This year I was in a cabin with other girls around 17-18 years old. It was sad for me to have to say goodbye to those campers who have now graduated and won’t be returning to camp next summer. Ostomy Camp is a wonderful experience for which I feel very grateful. The volunteers and staff are all so kind and understanding. They wouldn’t bat an eye if I were to say the word ‘cecostomy’. Everyone was very accommodating, explaining the day’s schedule of activities so that we could manage our ostomy routines.

Ostomy Camp gives me a sense of belonging, ostomy and all.

If possible, I would love the opportunity to go back to camp next year as it would be my final year of eligibility. The moral support that campers like me experience is invaluable and unique.

I’ve been lucky enough to attend Ostomy Camp three times and I would highly recommend the experience to any young person trying to navigate life with an ostomy.

To all the wonderful donors who make camp a reality, a truly heartfelt “THANK YOU”.

My words cannot adequately express how much I value the opportunity to go to camp.

It is such a special and meaningful experience, one only made possible by your generosity!

~ A Grateful Camper I appreciate the hard work people do to make camp possible, I

look forward to camp every summer since the first day I came to camp! Sadly, I graduated and this is the last time I’ll be at camp, hopefully I can return as a counselor at camp in the future and help make the campers have a great time there like I did!

My favorite activity was when we did mission impossible, a game where we have to try sneaking through the dark and touch a sign before the counselors up on the high ropes spotted us with very bright flashlights! It was lots of fun. I got to see many of my old friends and they were very supportive when I accidentally injured myself at camp... nothing bad just a sprain. It was nice seeing new faces and to help those who are new to camp get comfortable at camp. Being at camp is like a second home to me, I love the activities and the people who make camp possible and hanging out with people who understand me more. I would love to go back to camp next summer, however I graduated camp already but since I’m still in school maybe I get to go back one last time but we will see! ~ Jessica M

Helping the Ostomy Community One Client at a Time, at

Laura’s story Five years ago, Laura was diagnosed with ulcerative colitis, an inflammatory bowel disease. After trying several different medications that didn’t improve her condition, she recently underwent ileostomy surgery. The operation was a success and has drastically improved her health and her quality of life.

Laura is now learning how to care for and manage her ileostomy. She was looking for a place where she could easily access the products she needs, where she felt at ease discussing her condition, and where she could learn more about stoma care and management. This brought her to her local Wellwise by Shoppers™ store in Dryden, Ontario.

Ostomy care and products

During her visit, Laura had a consultation with Emily, a registered nurse and member of the Wellwise team. Emily provided a sympathetic ear and was able to walk Laura through the basics of stoma care, such as changing her pouch and caring for the skin around her stoma. She also helped Laura register with the top three ostomy manufacturers, so that she would be first on the list to receive free samples of new products.

Emily regularly completes online training offered by ostomy product manufacturers. This allowed her to further aid Laura on the best way to care for her stoma and to advise her on the best products and brands for her specific needs and lifestyle. If a Wellwise location doesn’t stock a certain ostomy product, Laura will be able to make a custom order, so she can always get the exact items she needs.

Ostomy support group

During her consultation, Laura was also told about the ostomy support group that the Dryden Wellwise store manager, Amanda, is in the process of setting up. Amanda hopes to hold the support group at least once a month as a safe space for people in the community to talk about any problems they’re having and offer each other help with best practices, tips and tricks, and emotional support. Wellwise by ShoppersTM has 43 locations across Canada that are ready to open their doors to local Ostomy groups. Reach out to the store in your local community to set up a time for your group to meet in a friendly and supportive environment.

Laura was able to find the products she needed, as well as the support and advice to help her feel confident in managing her ostomy needs. If you’d like to learn more about the ostomy support and products available, visit us at wellwise.ca or your local Wellwise store.

Disclaimer: The information presented in this article is designed for educational purposes only. You should not rely on any information in this post 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. n Note: This article was submitted by Wellwise by Shoppers Canada as part of their Platinum level sponsorship support of the 2022 Step Up for Ostomy Program.

WINTER 2022 OSTOMY CANADA 27

ASK A MEDICAL LIFESTYLE ADVISOR

Why the Pelvic Floor is so Important Response by Lisa Harris, BScPT, CAFCI How many times have you heard the term pelvic floor or pelvic floor dysfunction? How many patient guides mention the pelvic floor? These words occur often in conversation or print for those of us living with an ostomy. Guides or articles frequently outline a brief description of the pelvic floor and encourage pelvic floor exercises before and after surgery without, understandably, exploring the complexities of the pelvic floor. In recent years, as guides have been updated, pelvic floor information provided to the patient has dramatically improved, as has the general knowledge of the pelvic floor being important. Yet often the pelvic floor remains a mystery to ostomates. Why is the pelvic floor so important and, in particular, why is it important to ostomates?

The pelvic floor is made up of muscles that sling across the bottom of the pelvic ring starting from the pubic bone and travelling back to the sacrum and coccyx (tailbone). There are three layers of muscles in the sling that relax and contract to support the pelvic organs, as well as aid in breathing, the control of urinary functions, ano-rectal and sexual function. The pelvic floor works with deep abdominal muscles and the diaphragm to provide control to the joints of the pelvis and the lumbar spine. Importantly for ostomates, the pelvic floor muscles are a component in the prevention of parastomal hernias, the most common long-term complication of stomal formation3 with up to 70% of ostomates affected2. With a healthy, strong and coordinated pelvic floor, ostomates can reduce the risk of hernias5, pelvic floor dysfunction and pain.

Pelvic floor dysfunction (PFD) is the impaired relaxation and coordination of the pelvic floor muscles. PFD can be associated with pelvic floor pain or no pain at all. Varying causes of PFD and pelvic floor pain include but, are not limited to, IBD, trauma, pregnancy and delivery, as well as abdominal and pelvic surgeries such as ostomies and proctectomies (barbie butt). These surgeries directly

and indirectly affect the pelvic floor increasing the risk for pelvic floor dysfunction and pain due to changes to the endopelvic fascia (the connective tissue surrounding and supporting the pelvic organs), ligaments of the pelvis, scaring and adhesions (bands of scar-like tissue causing two or more abdominal structures to stick together).

For women, the uterus can change position, sitting higher and more posterior in the pelvis. The abdominal wall is altered with damage to nerve supply and the atrophy of the midline muscular wall4, as well as muscular weakness at the stomal formation site.

Furthermore, there may have been existing pelvic floor dysfunction and pain prior to surgical interventions from factors such as straining or altered breathing patterns from pain coping mechanisms.

With PVD and pain, pelvic floor muscles can be or have: • Hypertonic/Increased tone – pain and IBD tend to tighten the pelvic floor muscles, resulting in difficulty in emptying the bladder or rectum, pain with defecation, pain during intercourse, and/ or pain during orgasm for men • Hypotonic/Decreased tone – weakness or injury resulting in incontinence, poor by control of flatulence, difficulty in Why the Pelvic Floorurgency, is so Important Lisa Harris, BScPT, CAFCI maintaining an erection and decreased sensation for women • Poor coordination where the muscles are not reacting and How many times have you heard the term pelvic floor or pelvic floor dysfunction? How many interacting inThese incomplete emptying of the bladpatient guides correctly mention theresulting pelvic floor? words occur often in conversation or print for thoseor of rectum, us living with an ostomy. Guides or articles outline a brief description of the der incontinence, decrease in frequently sexual pleasure, pressure pelvic floor and encourage pelvic floor exercises before and after surgery without, with prolonged standing or lifting, and/or feeling with simple understandably, exploring the complexities of the pelvic floor.strain In recent years, as guides have 1 been updated, pelvic floor information provided to the patient has dramatically improved, as has activities the general knowledge of the pelvic floor being important. Yet often the pelvic floor remains a • Decreased elasticity - scar tissue, hormonal changes mystery to ostomates. Why is the pelvic floor so important and, in particular, why is it important • Affect sexuality – pain with intercourse in females and pain to ostomates? during orgasm for men

The pelvic floor is made up of muscles that sling across the bottom of the pelvic ring starting from the pubic bone and travelling back to the sacrum and coccyx (tailbone). There are three layers of muscles the sling that relax approach and contract to to support pelvic organs, as The typicalin post operative pelvic the floor exercise iswell as aid in breathing, the control of urinary functions, ano-rectal and sexual function. The pelvic floor strength training.

And though strength is important, as listed above, works with deep abdominal muscles and the diaphragm to provide control to the joints of the weakness is lumbar not thespine. onlyImportantly cause of for pelvic floor the dysfunction and pain. pelvis and the ostomates, pelvic floor muscles are a componen in is thetypically prevention multifactorial of parastomal hernias, the most common long-term complication of stomal It in development and regaining the conformation3 with up to 70% of ostomates affected2. With a healthy, strong and coordinated pelvic 5 nection and coordination between the deep abdominal muscles, floor, ostomates can reduce the risk of hernias , pelvic floor dysfunction and pain.

diaphragm and pelvic floor. It is anpicture important component for the one picture 2

7

28 OSTOMY CANADA WINTER 2022

return to a full active life, free of low back pain, abdominal pain, and free of limitations1.

If you find yourself still suffering from pelvic floor dysfunction or pain after completing the post operative exercise program you were given, you may want to consider additional assessment from a trained professional such as a pelvic floor physiotherapist.

They will perform a full assessment including a thorough subjective history and an objective physical assessment. The physical assessments often include an internal examination to effectively palpate and examine the pelvic floor muscles in order to determine the best course of treatment. Treatment can include education, behavioural modifications, strength and endurance exercises, relaxation exercises, stretching and/or biofeedback. It will be a program tailored to your specific needs.

To find a pelvic floor physiotherapist near you, search your provincial physiotherapy association ‘Find A Physio’ and specify, pelvic floor as the area of practice.

References

1. Stinchfield, B. Seeing a Pelvic PT After Abdominal Surgery... Why This Should Be Standard Care. Pinnacle Women’s Therapeutics. https://www. pinnaclewt.com/blog/seeing-a-pelvic-pt-after-abdominal-surgery-why-thisshould-be-standard-care. Published July 8, 2021. Accessed February 4, 2022.

2. Russel, S. Physical activity and exercise after stoma surgery - a complete guide. Convatec. https://meplus.convatec.co.uk/activity/physical-activity-andexercise-after-stoma-surgery-a-complete-guide/. Published 2022. Accessed February 4, 2022.

3. Stylinski R, Alzubedi A, and Rudzki S. Parastomal hernia – current

knowledge and treatment. Wideochir Inne Tech Maloinwazyjne. 2018 Mar; 13(1): 1–8.

4. Vigneswaran Y, Poli E, Talamonti MS, et al. Rectus abdominis atrophy after ventral abdominal incisions: midline versus chevron. Hernia. 2017; 21(4):619–22.

5. Thompson MJ, Trainor B. Prevention of parastomal hernia: a comparison of results 3 years on. Gastrointestinal Nursing 2007; 5(3): 22–8.

6. Male and Female Pelvic Floor Anatomy Side View. Pelvic Floor Muscles. https://www.continence.org.au/about-continence/continence-health/ pelvic-floor Published August 3, 2022. Accessed October 27,2022.

7. Core Activation by Burrell Education. A Bite-Sized Introduction To Your Pelvic Floor: Function, Dysfunction And The Surprising Truth About Kegels. https://www.laurajawad.com/post/an-introduction-to-your-pelvicfloor/ Published February 26, 2019. Accessed October 27, 2022.

These are contacts for the Provincial physiotherapy associations.

• British Columbia - https://bcphysio.org/find-a-physio • Saskatchewan – http://saskphysio.org/find-a-physiotherapist • Manitoba – https://mbphysio.org/find-a-physio •O ntario – https://physiotherapists.opa.on.ca/physiotherapists/?search=advanced • Quebec – https://oppq.qc.ca/en/find-a-professional/ • Nova Scotia – https://www.physiotherapyns.ca/find-a-physio • New Brunswick – https://nbphysioassociation.net/physiotherapist-directory/ • Newfoundland & Labrador – https://nlcpt.com/contact-us • Prince Edward Island – https://peipa.ca/find-a-physiotherapist/ • https://www.womenshealthcpa.com/

Lisa is a member of the Medical Lifestyle Advisory Team for Ostomy Canada Society

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WINTER 2022 OSTOMY CANADA 29

g s n i t a br o n r b e élé l e C C

of Mutual Support

de soutien mutuel

This year marks the 60th anniversary of ostomy support groups

joining together for a common cause. As I think back over my time with Ostomy Canada Society (Note 1), my mind is flooded with memories of the people I have met, the friendships made, the ideals shared, and our dedication to all people living with an ostomy, and their circles of support, helping them to live life to the fullest.

Ostomy Canada is now the voice of hundreds of thousands of Canadians representing people who had undergone bowel or urinary diversion surgery, those living with an ostomy or continent diversion, their caregivers, family and friends, members of the medical community, ostomy product manufacturers and distributors.

Today, Ostomy Canada is a national network of ostomy support groups serving over 50 communities from coast to coast. We reach out on social media platforms and we provide valuable information to the public through our website, webinars, newsletters, publications, and conferences.

Ostomy surgery dates back to the early 1700s. Survivors of the operation were left on their own to manage the effluent with rags and towels as there was no stoma or wound management care available. In the subsequent sections, we will look back over the past 60 years at some of the ways that ostomy support groups have changed the world. These include: in-person support, information support, the Visitor Program, physical management support, youth camp, financial support, caregiver support, and ostomy appliances.

1950's

In-Person Support The birth of ostomy support groups arose in the aftermath of World War Two as thousands of injured veterans returned home after the war. Many of the survivors suffered from shrapnel wounds to the abdomen or other trauma that required ostomy surgery.

Large numbers of veterans were warehoused together for months in specialized hospital wards following ostomy surgery. I can recall my own experience in the Royal Canadian Navy in the late 1980s when we were sent to the National Defence Medical Centre in Ottawa for ostomy surgery and how we supported each other during the lengthy recovery process before returning to active duty.

The early ostomy support groups were formed by patients, progressive doctors and nurses. Throughout the 1950s, as the veterans recovered, these volunteer-staffed groups began to advocate 30 OSTOMY CANADA WINTER 2022

Nursing Sister D. Mick reads a patient's chart during rounds at No. 15 Canadian General Hospital.

L'infirmière militaire D. Mick lit le dossier d'un patient lors de visites à l'Hôpital général canadien no 15 à El Harrouch.

Frederick G. Whitcombe/MDN/BAC/PA-141498

on behalf of all ostomates to improve the quality of life after surgery. These meetings marked the first known attempts at mutual support and self-help groups. In 1962, delegates from 24 of these peer-led patient support groups from Canada and the United States met together to approve the establishment of the United Ostomy Association (UOA), an international network for bowel and urinary diversion support groups. Today, there are ostomy support groups in every region of the planet.

1956

Information Support These early pioneers recognized the need to share their experiences.

In 1956, forty persons from ten ostomy support groups met for their first conference, at which time they agreed to publish two newsletters: one for colostomies and one for ileostomies. By 1962, the annual conferences were attracting over 500 people and the UOA published the first edition of the Ostomy Quarterly Magazine. In 1988, UOA gave permission to Bette Yetman of Dartmouth, Nova Scotia, to have selected articles from the Ostomy Quarterly and the Phoenix Magazine translated and distributed to French-speaking

and Self-help

et d'entraide

by Ed Tummers

Cette année marque le 60e anniversaire des groupes de soutien

aux personnes stomisées qui se sont réunis pour une cause commune. En repensant au temps que j'ai passé au sein de la Société Canadienne des Personnes Stomisées (Note 1), mon esprit est inondé de souvenirs des personnes que j'ai rencontrées, des amitiés nouées, des idéaux partagés et de notre dévouement envers toutes les personnes stomisées et leurs cercles de soutien, les aidant à vivre pleinement leur vie.

La Société Canadienne des Personnes Stomisées est maintenant la voix de centaines de milliers de Canadiens représentant les personnes qui ont subi une chirurgie intestinale ou de dérivation urinaire, les personnes stomisées et ceux qui vivent avec une dérivation continente, leurs soignants, leur famille et leurs amis, les membres de la communauté médicale, les fabricants et les distributeurs de produits de stomie. Aujourd'hui, la Société Canadienne des Personnes Stomisées est un réseau national de groupes de soutien pour les stomies desservant plus de 60 communautés d'un océan à l'autre. Nous communiquons sur toutes les plateformes de médias sociaux les plus populaires et nous fournissons des informations précieuses au public via notre site Web, des webinaires, des newsletters, des publications et des conférences.

La chirurgie de stomie remonte au début des années 1700. Les survivants de l'opération ont été laissés à eux-mêmes pour gérer la sortie avec des chiffons et des serviettes car il n'y avait pas de soins de stomie ni de gestion des plaies. Dans les sections suivantes, nous reviendrons sur les 60 dernières années sur certaines des façons dont les groupes de soutien aux stomies ont changé le monde. Ceux-ci comprennent : le soutien en personne, le soutien à l'information, le programme de visiteurs, le soutien à la gestion physique, le camp pour les jeunes, le soutien financier, le soutien aux soignants et les appareils de stomie.

1950's

Soutien en personne La naissance des groupes de soutien aux personnes stomisées est survenue au lendemain de la seconde guerre mondiale alors que des milliers d'anciens combattants blessés rentraient chez eux après la guerre. De nombreux survivants ont souffert de blessures causées par des éclats d'obus à l'abdomen ou d'autres traumatismes nécessitant une stomie.

Un grand nombre d'anciens combattants ont été placés pendant des mois ensemble dans des services hospitaliers spécialisés après une chirurgie pour stomie. Je me souviens de ma propre expérience dans la Marine Royale Canadienne à la fin des années 1980 lorsque nous avons été envoyés au centre médical de la défense nationale à Ottawa pour une chirurgie de stomie et comment nous nous sommes soutenus pendant le long processus de rétablissement avant de retourner au service actif.

Les premiers groupes de soutien aux stomies ont été formés par des patients, des médecins progressistes et des infirmières. Tout au long des années 1950, alors que les anciens combattants se rétablissaient, ces groupes de bénévoles ont commencé à plaider au nom de toutes les personnes stomisés pour améliorer la qualité de vie après la chirurgie. Ces réunions ont marqué les premières tentatives connues de soutien mutuel et d'entraide. En 1962, les délégués de 24 de ces groupes de soutien aux patients dirigés par des pairs du Canada et des États-Unis se sont réunis pour approuver la création de la United Ostomy Association (UOA), un réseau international de groupes de soutien en matière de dérivation intestinale et urinaire.

Aujourd'hui, il existe des groupes de soutien pour les personnes stomisées dans toutes les régions de la planète.

1956

Aide à l'information Ces premiers pionniers ont reconnu la nécessité de partager plus largement leurs expériences. En 1956, quarante personnes de dix groupes de soutien aux personnes stomisées se sont réunies pour leur première conférence, date à laquelle elles ont convenu de publier deux bulletins : un pour les colostomies et un pour les iléostomies. En 1962, les conférences annuelles attiraient plus de 500 personnes et l'UOA publia la première édition du Ostomy Quarterly Magazine. En 1988, l'UOA a autorisé Bette Yetman de Dartmouth, en Nouvelle-Écosse, à faire traduire et distribuer des articles sélectionnés du Ostomy Quarterly et du Phoenix Magazine aux groupes de soutien francophones pour les personnes stomisées sous le nom de « Ostomy Française ». En 1993, l'UOA a installé un numéro de téléphone sans frais comme moyen de sensibilisation.

En 1994, UOA Connection a publié sa première édition mensuelle pour améliorer les communications entre le bureau national et les groupes locaux de soutien aux personnes stomisées. En 1995, Maria Siegl a invité Roger Ivol à assumer le poste de rédacteur en chef d'un UOA Canada Talks, qui allait devenir Ostomy Canada Magazine. En 1996, Bette Yetman a lancé le site Web national. En 1997, le Canada a accueilli le 9e congrès mondial de l'Association internationale des Personnes stomisés avec des participants de plus de 60 pays réunis pour partager de l'information. En 2011, un forum de discussion en ligne a été lancé, ce qui a ouvert la voie à la participation sur d'autres plateformes virtuelles. En 2018, en collaboration avec Crohn et Colite Canada, la Société Canadienne des Personnes Stomisées a organisé son premier événement Facebook WINTER 2022 OSTOMY CANADA 31

Our History ostomy support groups as “Ostomy Francaise”. In 1993, UOA installed a toll-free telephone number as an outreach. In 1994, the UOAConnection published its first monthly edition to improve communications between the national office and the local ostomy support groups. In 1995, Maria Siegl invited Roger Ivol to take on the job of editor of UOA Canada Talks, which would evolve to become Ostomy Canada magazine. In 1996, Bette Yetman launched the national website. In 1997, Canada hosted the 9th International Ostomy Association World Congress held in Calgary with participants from over 60 countries gathering to share information. In 2011, an online discussion board was launched, which paved the way for participation on other virtual platforms. In 2018, in collaboration with Crohn’s and Colitis Canada, Ostomy Canada held its first Facebook Live event. When lockdowns were implemented during the COVID pandemic, the virtual world was our primary link with the public. In 2022, the website underwent its first major update in order to become current and relevant. The quarterly newsletter, Ostomy Canada Connects, also received a brand new look.

1968

Physical Management Support In each ostomy support group, there was usually one person, sometimes called the ‘stoma tech’, who took a special interest in the physical management of the stoma. In 1958, Mrs. Norma Gill brought the stoma world to light with her observations and suggestions following her own surgery when she was appointed as an ‘ostomy technician’ at the Cleveland Clinic in Ohio. She established a training program for rehabilitated ostomates from the various ostomy support groups. One of the most significant events that redirected the services of UOA occurred in 1968 when UOA supported a group of these ostomy technicians to form the American Association of Enterostomal Therapists, which later became first the North American Association of Enterostomal Therapists, then the International Association of Enterostomal Therapists, and now the Wound Ostomy Continence Nurses Association (WOCN). In 1964 Bertha Okun of Montreal became Canada’s first Enterostomal Therapist. In 1978, UOA established the Archie Vinitsky Scholarship Fund for Enterostomal Therapy Education. In 1976 the first Canadian Enterostomal Therapy School opened in Vancouver, followed shortly thereafter by nursing certificate programs at University of Toronto and Université de Montréal. In 1980, The Canadian Association for Enterostomal Therapy (CAET) was formed. In 2018, CAET changed their name to Nurses Specialized in Wound, Ostomy, & Continence Canada (NSWOCC) to better reflect the scope of their specialty. Throughout our history, the ostomy nurse, by whatever name, has been the vital link between the patient and the ostomy support group.

32 OSTOMY CANADA WINTER 2022

1971

The Visitor Program The sharing of information and experiences quickly evolved into what we know today as the Visitor Program. Doctors and ostomy nurses were aware of the value of ostomy support groups in the rehabilitation process. They quickly realized how valuable it would be to have ostomates visit patients while recovering in the hospital. In 1971, UOA published the Visitor Folder to be given to new patients while still in hospital. In 1973, UOA established a Professional Advisory Board, and more publications became available. In 1977, the International Association of Enterostomal Therapy (IAET) presented UOA with the “Ostomy Bill of Rights”.

In 1979, the first Visitor Education Manual was completed and approved as a certification standard for visitor training by UOA, IAET and the American Cancer Society. This certification opened the door to expanding the Visitor Program into hospitals across the country. In 1998, Visitor Program Guidelines were drafted and approved for use in Canada by our medical advisors and published in 2000 as the Visitor Manual. Finally, in 2022, Ostomy Canada published an updated Ostomy Visitor Program Manual. Coming soon, the Visitor Certification will be able to be done through online training and the public can connect with a Visitor through an on-line match-up search.

1978

Youth Camp

In recognition of the growing number of young people with an ostomy, the first Youth Rally was held in 1978 in Boulder, Colorado.

“The Year of the Youth” was the official theme for 1985, with special recognition and programming for UOA’s younger members. In 1990, UOA began sponsoring children with an ostomy to attend Easter Seals Camp Horizon in Bragg Creek, Alberta. In 2003, CBC filmed a Youth Camp video which was launched at the annual conference in Saskatoon and was then broadcast on national television.

In 2011, the Shane Banfield Memorial Fund was established to help with financial aid for youngsters with urinary issues to attend camp.

In 2019, Pat Cimmeck was honoured for her 28 years as Youth Camp Administrator and her able assistant, Lisa Gausman assumed the responsibility along with a newly instated camp committee. In 2022, in memory of the late Frank Argue, the “Argue Family Youth Camp Fund” was established.

Live. Lorsque les confinements ont été mis en place pendant la pandémie de COVID, le monde virtuel était notre principal lien avec le public. En 2022, le site Web a reçu sa plus récente modification pour rester à jour et pertinent, et le bulletin trimestriel, Ostomy Canada Connects, a reçu un tout nouveau look.

1968

Soutien à la gestion physique

stomisées dans le processus de réadaptation.

OSTOMY VISITOR Ils ont rapidement réalisé à quel point il PROGRAM serait utile que des personnes stomisées visiFOR PEOPLE AND THEIR FAMILIES LIVING WITH AN OSTO tent des patients pendant leur convalescence MY à l'hôpital. En 1971, l'UOA publia le dossier du visiteur à remettre aux nouveaux patients pendant leur séjour à l'hôpital. En 1973, l'UOA a créé un conseil consultatif professionnel et d'autres publications sont devenues disponibles. En 1977, l'Association internationale de stomothérapie (IAET) a présenté à l'UOA la « charte des droits pour les personnes stomisées ». En 1979, le premier manuel d'éducation des visiteurs a été achevé et approuvé comme norme de certification pour la formation des visiteurs par l'UOA, l'IAET et l'American Cancer Society. Cette certification a ouvert la porte à l'expansion du programme de visiteurs dans les hôpitaux à travers le pays. En 1998, les directives du programme des visiteurs ont été rédigées et approuvées pour utilisation au Canada par nos conseillers médicaux et publiées en 2000 sous le nom de manuel du visiteur. Enfin, en 2022, la Société Canadienne des Personnes Stomisées a publié une mise à jour du manuel du programme de visiteurs pour les personnes stomisées. Bientôt, la certification des visiteurs pourra être effectuée par le biais d'une formation en ligne et le public pourra entrer en contact avec un visiteur par le biais d'une recherche de correspondance en ligne.

TO DONATE

www.ostomycanada.ca/d

onation-page/ Or call 1-888-969-9698

Donate now to help

people living with an ostomy across Canada live life to the fullest.

SUPPORT Support is likely to be most effective when it is a team effort that includes medical professionals, family and close friends, and the Ostomy Canada Society Visitor. Please request that your family be involved in these visits so that your support team will be more knowledgeable with what you are experiencing. No matter what the outcome, most people need much support from the time of diagnosis and throughout the rehabilitation process.

BECOMING A CERTIFI ED VISITOR If you are a member of Ostomy Canada Society and you wish to become a visitor then you should contact your local Chapter or Group. They will put you in contact with the Visitor Coordinator who will discuss the visiting program with you and what the selection of visitor candidates involves. The decision to become a visitor and helping others who share the same bond is very rewarding.

Ostomy Canada Society Suite 210, 5800 Ambler Drive Mississauga, ON L4W 4J4 Phone: 905-212-7111 Fax: 905-212-9002 Toll Free: 1-888-969-9698 Email: info1@ostomycan ada.ca Website: www.ostomycana da.ca A Non-Profit Canadian Charitable Organization

Your Local Ostomy

Dans chaque groupe de soutien pour les personnes stomisées, il y avait généralement une personne, parfois appelée le « technicien en stomie », qui s'intéressait particulièrement à la gestion physique de la stomie. En 1958, Mme Norma Gill a mis en lumière le monde de la stomie avec ses observations et ses suggestions à la suite de sa propre chirurgie lorsqu'elle a été nommée technicienne en stomie à la Cleveland Clinic. Elle a établi un programme de formation pour les personnes stomisées réhabilitées provenant des divers groupes de soutien aux personnes stomisées. L'un des événements les plus importants qui ont réorienté les services de l'UOA s'est produit en 1968 lorsque l'UOA a soutenu un groupe de ces techniciens en stomie pour former l'Association internationale de stomothérapie (IAET). En 1974, en collaboration avec la Société canadienne du cancer et la Commission de la santé de la Nouvelle-Écosse, Lynn Stewart a été embauchée comme première stomothérapeute (TE) au Canada atlantique. L'une des membres fondatrices de notre chapitre d'Halifax, Ruth Kenney, s'est qualifiée peu après comme TE. En 1978, l'UOA a créé le Fonds de bourses d'études Archie Vinitsky pour l'enseignement de la thérapie entérostomiale. En 1979, la Dalhousie School of Nursing a mis à jour le programme d'études pour les étudiantes en soins infirmiers de deuxième année afin d'y inclure une formation sur les stomies. En 1980, l'Association canadienne de stomothérapie (CAET) est formée et la première école canadienne de stomothérapie est ouverte à Vancouver, suivie peu de temps après par des programmes de certificat en soins infirmiers à l'Université de Toronto et à l'Université de Montréal. En 1991, Hollister Inc. a créé la bourse de conférences Norma Gill-Thompson pour parrainer des conférenciers exceptionnels lors des conférences annuelles. En 2001, Gail Creelman est devenue la première infirmière en TE pédiatrique au Canada atlantique. En 2018, CAET a changé son nom pour Infirmières Spécialisées en Plaies, Stomies et Continence (ISPSCC) afin de mieux refléter la portée de leur spécialité. Tout au long de notre histoire, l'infirmière en stomie, quel que soit son nom, a été le lien vital entre le patient et le groupe de soutien pour personnes stomisées.

1971

Le programme des visiteurs Le partage d'informations et d'expériences a rapidement évolué vers ce que nous connaissons aujourd'hui sous le nom de programme de visiteurs. Les médecins et les infirmières en soins de stomie étaient conscients de la valeur des groupes de soutien pour les personnes

Chapter is:

JOIN US TODAY! 1-888-969-9698 www.ostomycanada.c a

Live Life to the Fullest

1978

Camp jeunesse En reconnaissance du nombre croissant de jeunes personnes stomisés, le premier rassemblement des jeunes a eu lieu en 1978 à Boulder, Colorado. "L'année de la jeunesse" était le thème officiel de 1985, avec une reconnaissance et une programmation spéciale pour les jeunes membres de l'UOA. En 1990, l'UOA a commencé à parrainer des enfants stomisés pour qu'ils participent à l'Easter Seals Camp Horizon à Bragg Creek, en Alberta. En 2003, CBC a filmé une vidéo du camp jeunesse qui a lancé la conférence annuelle à Saskatoon et a ensuite été diffusée à la télévision nationale. En 2011, le Shane Banfield Memorial Fund a été créé pour aider financièrement les jeunes ayant des problèmes urinaires à participer au camp. En 2019, Pat Cimmeck a été honorée pour ses 28 ans en tant qu'administratrice du camp de jeunes et son assistante compétente, Lisa Gausman, a assumé la responsabilité. En 2022, à la mémoire de feu Frank Argue, le « Argue Family Youth Camp Fund » a été créé.

1989

Aide financière Un autre obstacle majeur pour les personnes stomisées était le coût des fournitures de stomie. L'UOA a commencé à faire pression WINTER 2022 OSTOMY CANADA 33

Our History

1989

Financial Support Another major hurdle for people living with an ostomy was the cost of ostomy supplies. UOA began pressuring provincial departments of health to help cover the cost of ostomy supplies after being discharged from the hospital. Still today, there is a disparity of provincial reimbursement programs ranging from no to full coverage in some provinces.

In 1989, the CRA approved the inclusion of having a permanent ostomy in the Disability Tax Credit. This proved to be very controversial because, at the same time, there were significant efforts to eliminate the stigma of disability surrounding ostomy surgery. In 2002, the Quebec chapters formed a separate provincial organization, l’Association québécoise des personnes stomisées (AQPS), to access provincial funding. In 2004, the Manitoba Ostomy Program initiative eliminated co-payment on ostomy supplies and equipment, thereby lifting the financial burden of care for over 3000 ostomates in the province. In 2006, the “Government Subsidies for Ostomy Supplies Committee” was formed and all the provincial premiers were presented briefings to assist in their efforts to provide provincial reimbursement for ostomy supplies. This work continues today as the responsibility of the Advocacy Committee.

1999

Caregiver Support It is hard to imagine that for most of our history, participation in many of the support programs was restricted to those people actually living with an ostomy. In 1999, Betty Woolridge of Halifax presented the concept of a national support group for caregivers called “Spouses and Significant Others” (SASO). Although the concept was initially resisted, a SASO committee was formed and these caregivers quickly became integral contributors to the ostomy support network. In 2009, the concept was expanded to include a “Parents of Children with an Ostomy” support group. Many Chapters/Support Groups have these local forums as off shoots or part of their structure.

2021

Ostomy Appliances We have come a long way from rags and towels in managing our output, but that was the reality until the 1950s. In Denmark in 1954, Elise Sorenson, a nurse, had an idea for an ostomy pouch that would adhere after her sister had a colectomy and required a stoma.

34 OSTOMY CANADA WINTER 2022

By 1960, there were about 25 small ostomy companies, almost all of which were started by people who had a stoma, or by a family member with one. In the 1960s, karaya skin barriers and odor proof films were developed. The big breakthrough was the hydrocolloid adhesive which had been adapted from dentistry because of its ability to stick to warm, moist surfaces. In 1972, Squibb introduced the “Stomahesive” wafer, the most important development in the rapidly growing ostomy industry. A major hurdle for people living with an ostomy was having access to these miracle appliances. I recall Gerry Mulcahy, one of the founding members of the Halifax Chapter in 1973, remarking that the closest places to buy these ostomy appliances were either in Quebec or Maine. They would make the long trek to Bangor, Maine regularly to stock up on supplies for the group.

Ostomy Bags: Then and Now Sacs de stomie : hier et aujourd'hui Photos provided by/fournies par Ann Durkee

As difficult as it was for Canadians to get access to ostomy supplies, it was almost impossible in many foreign countries. In 1982, UOA launched “Project Mexico” to gather ostomy supplies donated by UOA members and then transport them to Mexico City to distribute to needy ostomy patients. Due to complications with customs clearances and transportation arrangements, responsibility was transferred to the International Ostomy Association (IOA) and rebranded as “Sending Help and Rehabilitation Everywhere” (S.H.A.R.E.). A separate non-profit fund-raising organization was established known as “Friends of the International Ostomy Association” (FIOA). At a meeting of the IOA in 1983, Maria Siegl from Canada asked for permission to start a Canadian charity so that they could issue tax receipts to Canadian donors. In 1987, the name was officially changed to “Friends of Ostomates Worldwide (Canada)” (FOW(C). The work done by Maria Siegl was recognized at the 7th World Congress of the IOA in 1991 in Brazil at which time she was introduced to the delegates as “The Mother of World Ostomates”. In 1995, the Allan Porter Award was initiated for persons making a substantial contribution to FOWC. Since its founding, FOWC has shipped over 100,000 pounds of ostomy supplies to 30 different countries.

Ostomy Without Borders was created in the spring of 2021.

Jacques Beaudreault, President of the Association of Ostomy Richelieu-Yamaska (Quebec), and Myriam Teyssié, President of the Union of Ostomy Grand Sud (France), wanted to enhance connections throughout the francophonie. In no time at all, it has expanded into seven countries in three continents; representing patients, health care professionals and researchers. continued on page 58

sur les ministères provinciaux de la santé pour qu'ils couvrent le coût des fournitures de stomie après la sortie de l'hôpital. Encore aujourd'hui, il existe un méli-mélo de programmes de remboursement provinciaux allant jusqu'à une couverture complète dans certaines provinces. En 1989, l'ARC a approuvé l'inclusion des stomies permanentes dans le crédit d'impôt pour personnes handicapées (CIPH). Cela s'est avéré très controversé car, en même temps, des efforts importants ont été déployés pour éliminer la stigmatisation de l'invalidité entourant la chirurgie des stomies. En 2002, les chapitres du Québec ont formé une organisation provinciale distincte, l'Association québécoise des personnes stomisées (AQPS), pour accéder au financement provincial. En 2004, l'initiative Manitoba Ostomy Program a éliminé la quote-part des fournitures et de l'équipement de stomie, allégeant ainsi le fardeau financier des soins pour plus de 3 000 personnes stomisées dans la province. En 2006, le Comité des subventions gouvernementales pour les fournitures de stomie a été formé et tous les premiers ministres provinciaux ont reçu des séances d'information pour les aider dans leurs efforts visant à assurer le remboursement provincial des fournitures de stomie. Ce travail se poursuit aujourd'hui sous la responsabilité du comité de défense des intérêts.

1999

Soutien aux soignants Il est difficile d'imaginer que pendant la plus grande partie de notre histoire, la participation à de nombreux programmes de soutien a été limitée aux personnes vivant réellement avec une stomie. En 1999, Betty Woolridge d'Halifax a présenté le concept d'un groupe national de soutien pour les soignants appelé « Conjoints et personnes importantes » (SASO).

Bien que le concept ait rencontré de la résistance au départ, un comité SASO a été formé et ces soignants sont rapidement devenus des contributeurs à part entière au réseau de soutien aux personnes stomisées. En 2009, le concept a été élargi pour inclure un groupe de soutien « Parents d'enfants stomisés » et de nombreux chapitres/ groupes de soutien ont ces forums locaux comme des ramifications ou une partie de leur structure.

2021

un membre de la famille qui en avait une. Dans les années 1960, des barrières cutanées karaya et des filtres anti-odeurs ont été développés. La grande percée a été l'adhésif hydrocolloïde qui avait été adapté de la dentisterie en raison de sa capacité à adhérer aux surfaces chaudes et humides. En 1972, Squibb a introduit la plaquette "Stomahesive", le développement le plus important dans l'industrie de la stomie en croissance rapide.

Un obstacle majeur pour les personnes stomisées était l'accès à ces appareils miracles. Je me souviens de Gerry Mulcahy, l'un des membres fondateurs de notre chapitre d'Halifax en 1973, remarquant que les endroits les plus proches pour acheter ces appareils de stomie étaient soit au Québec, soit au Maine. Ils feraient régulièrement le long trajet jusqu'à Bangor, dans le Maine, pour s'approvisionner en fournitures pour le groupe.

Aussi difficile qu'il soit pour les Canadiens d'avoir accès aux fournitures de stomie, c'était presque impossible dans de nombreux pays étrangers. En 1982, l'UOA a lancé le « Projet Mexique » pour rassembler les fournitures de stomie données par les membres de l'UOA, puis les transporter à Mexico pour les distribuer aux patients stomisés dans le besoin. En raison de complications liées aux dédouanements et aux modalités de transport, la responsabilité a été transférée à l'International Ostomy Association (IOA) et rebaptisée "Sending Help and Rehabilitation Everywhere" (S.H.A.R.E.).

Une organisation de collecte de fonds à but non lucratif distincte a été créée sous le nom de « Friends of the International Ostomy Association » (FIOA). Lors d'une réunion de l'IOA en 1983, Maria Siegl du Canada a demandé la permission de démarrer un organisme de bienfaisance canadien afin qu'il puisse émettre des reçus d'impôt aux donateurs canadiens. En 1987, le nom a été officiellement changé pour Friends of Ostomates Worldwide Canada (FOWC). Le travail accompli par Maria Siegl a été reconnu lors du 7e Congrès mondial de l'IOA en 1991, date à laquelle elle a été présentée aux délégués comme "La mère des stomisés du monde".

En 1995, le prix Allan Porter a été créé pour les personnes apportant une contribution substantielle à la FOWC. Depuis sa création, FOWC a expédié plus de 100 000 livres de fournitures de stomie dans 30 pays différents.

Stomisés Sans Frontières a vu le jour au printemps 2021. Jacques Beaudreault, Président de l'Association des Stomisés RichelieuYamaska (Québec), et Myriam Teyssié, Présidente de l'Union des Stomisés Grand Sud (France), ont souhaité renforcer les liens dans toute la francophonie. En un rien de temps, il s'est étendu à 7 pays sur trois continents, représentant les patients, les professionnels de suite page 58 la santé et les chercheurs.

Appareils de stomie Nous avons parcouru un long chemin depuis les chiffons et les serviettes dans la gestion de notre production. Mais c'était la réalité jusque dans les années 1950. Au Danemark en 1954, Elise Sorenson, une infirmière, a eu l'idée d'une poche de stomie qui adhérerait après que sa sœur ait subi une colectomie et ait eu besoin d'une stomie. En 1960, il y avait environ 25 petites entreprises de stomie, presque toutes créées par des personnes qui avaient une stomie ou WINTER 2022 OSTOMY CANADA 35

OUR MEMBERS WIN AWARDS

Awards/Recognition/Kudos/Celebration/Thank you This past year, Ostomy Canada unveiled its completely revised Awards Manual (www.ostomycanada.ca/our-awards/). Our goal was to streamline the information, nomination process, forms, selection, and announcement of Award recipients. Based on the response, the changes we made have been successful.

But this article is not about paper, process and forms, it is about the 2022 award recipients doing amazing work in Canada.

UNSUNG HEROES We know who they are. The people who may not always seek the spotlight. The individuals who always seem to say “yes” or “What can I do to help?” whenever asked. They could be new to our group or could be what others call the steady lights; always on and bright.

They set up meetings, call volunteers, bake, manage the Step-Up event, make sure materials are distributed or are available for when someone is looking for help and direction. Unsung? Maybe. The backbone of many of our groups? Definitely. This past year we wrote four brief stories in our revised quarterly ‘Connects’ newsletter. The 2022 Unsung Heroes are: Blanca Baquero, Ostomy Annapolis Valley/Ostomy Halifax Society

Deb Rooney , UOA Vancouver Chapter

Jo Ann Tremblay, Medical Lifestyle Advisory Team

Betty Robertson, Comox Valley Ostomy Peer Support Group

their attributes. They come to meetings, they provide firsthand advice, they make visits in hospitals or in clinics, and they encourage individuals and their families to join a support group. They are leaders within their communities by bringing a positive influence to new patients and they facilitate educational sessions when and where they can. They are caring, compassionate and possess exceptional communication skills. They always seem to be there to help by going the extra mile. They help support fundraising and awareness building within their communities. They are exceptional NSWOCs. This year we had wonderful nominations; two of which seemed to describe the recipients as going above and beyond all of the time.

Letters of support from multiple stakeholders described them as ‘godsends’ and as individuals who explain in detail some of the changes that may occur post surgery. They help create bridges of hope in setting up visits, they help create education days for new and existing patients, they volunteer for our Youth Camp, they offer solutions to patients in ostomy care. Both go out of their way to share their experiences and promote the needs of the ostomy community at conferences and in public forums. They are dedicated, professional, enthusiastic, informed and well-respected in and beyond their communities. Ostomy Canada is proud to recognize and appreciate:

Denise Nicholson, Moncton Ostomy Chapter

Sheryl Walker, Regina and District Ostomy Society

CHAIR’S AWARD NSWOC RECOGNITION AWARD The Nurse Specialized in Wound, Ostomy and Continence Recognition (NSWOC) Award is given to an NSWOC who has supported persons living with an ostomy through involvement with his/her local Chapter/Peer Support Group activities and at national functions. The Award also enables Ostomy Canada members to acknowledge their NSWOC for his/her support and services. Do you remember telling people that your NSWOC is the most helpful person ever? That no one does what he/she does. We vocalize 36 OSTOMY CANADA WINTER 2022

The Chair’s Award states that “the Award can be bestowed on any member at any level within the organization or an associate who the Chair of the Board (currently - Ann DurkeeMacIsaac) deems to have demonstrated outstanding voluntary services on behalf of the organization”.

The 2022 Chair’s Award recipient is Ian MacNeil from Ottawa.

‘Outstanding’ is a word that sets individuals apart; they are not necessarily a better person but is a person who has committed to a task at hand and typically goes above and beyond. The 2022 Chair’s Award is being bestowed on a person who is an outstanding volunteer at the local, regional, and national level. He is someone who has committed his time, talents, and treasures to improve those who have an ostomy or their circles of support.

Having had ostomy surgery in 1997, Ian soon became involved in the local ostomy group in Ottawa. After nearly ten years of going to meetings and doing ‘whatever’ was asked of him (events, visitations, advocacy work, meeting management, membership, etc.), he joined the Ottawa Board in 2010. He became their Vice President in 2012 and then their President in 2014. Two years later he once again became their Vice President and in that same year, became President again following the death of a long-time colleague. Ian became involved in Ostomy Canada (formerly UOAC) as an observer in 2013, Board member and Advocacy member in 2015 (a role he has since led as a Pillar Advisor) and still sits on the national Board while serving as a Co-Administrator in Ontario. He works tirelessly supporting the Board and doing whatever is thrown at him: Step Up Planning Committee, Privacy Officer, Co-Pillar Advisor for Government Relations or providing sage advice to his Board colleagues.

Ian is known as a person who has conviction, compassion, and a sense of humor. Ian is an avid fisherman, gardener and he loves to take early morning walks. He skis, curls, reads, skates, swims, hikes, and bikes. As a person with an ostomy, he truly does embrace the slogan: “living life to the fullest”. In his professional life, Ian worked at various senior positions for Consumer Distributing, as a manager for VAC Services and for a US based warranty group. He retired in 2010. Now he spends his days reading, being active, supporting the ostomy community and cooking which his wife and family enjoys the outcome of! We all are proud of Ian’s accomplishments, contributions and being recognized by this high honor.

Author’s note about Ian: having worked in this not-for-profit industry for thirty plus years, John Hartman describes Ian MacNeil as a model volunteer, a mentor of progress and change, a committed-to-task individual, and an ‘outstanding’ human being….and a Senators fan.

The nominee must have been or is active at the national level by being on Committees, the Board of Directors or Task Forces. They help promote and participate in such programs as the Visitor program, newsletters, the magazine, policy development, outreach and fundraising.

This year’s recipient has been a member of their local Chapter since the mid 1990s following a lengthy battle with colitis and having had ileostomy surgery. He immediately became a certified visitor and has retained the certification to this day. The individual can bring empathy and caring to patients while they are in the hospital and is always ready to spend time with new members at meetings. This person served as President of Ostomy Halifax Society for four years leading Ostomy Halifax through very positive years with enthusiasm, intelligence, and a penchant for generating and guiding volunteers to step forward. His friendly manner enthused his executive members to go above and beyond what was required of them.

He served on the national Board of Directors for several years, taking leadership roles in many areas; particularly governance, for which he helped author a new manual. He helped the national organization take important steps to ensure a viable future. Locally, he has been involved in fund-raising ventures, has appeared on local television to promote the chapter and has always been available to provide sage advice to any executive and member. He relishes the opportunity to meet new people living with an ostomy always being there with a handout to greet and welcome them. Congratulations, the 2022 Maple Leaf award recipient is:

Ed Tummers, Ostomy Halifax Society

MAPLE LEAF AWARD The Maple Leaf Award is the most prestigious honour presented by Ostomy Canada. It is given to a member or associate who has demonstrated outstanding volunteer service for the benefit of Ostomy Canada Society and its members. According to the selection criteria for Ostomy Canada’s Maple Leaf Award, the individual must be a member in good standing. He/she must possess leadership skills to guide the Chapter and its activities for the betterment of the group.

THE DATES TO REMEMBER ARE: Promote Awards Manual/Nominations: January to April 2023 Nominations deadline: May 1, 2023 Selection Period by Committee: June 15, 2023 Announcements made: Ostomy Canada AGM 9/23 Unsung Heroes: October 2022-July 2023

WINTER 2022 OSTOMY CANADA 37

OUR MEMBERS WIN AWARDS

OSTO M Y C A N A DA

WOC-EP Nurses AWARD

WOC-EP BURSARY RECIPIENT 2022

Michelle Paige Buffalo

May, we were thrilled to present Michelle

her application, we found that she empow-

Paige Buffalo with one of the WOC-EP bur-

ers her clients; works alongside surgeons;

saries. As a graduate in 2021, Michelle pro-

helps foster a broad level of education

vides all specialized ostomy issues as an

and personal awareness; has kept in touch

Acute RN Case Manager and Direct Team

with her NSWOC colleagues, and is pas-

Lead for indigenous and non-indigenous

sionate and compassionate in the care she

people. She has been able to build a criti-

provides. Since her nursing career began

cal bridge of support for her

as a nursing attendant, she soon

clients with new and existing

graduated in 2010 in Alberta

ostomies. With these experi-

with her BScN and received her

Ostomy Canada Society’s core value is

ences, Michelle has been able to

NSWOC designation in 2021.

offering program and financial support to a

be part of their healing journey

Michelle is a Samson Cree Nation

number of like-minded and aligned part-

and help them feel empowered.

band member and currently

ners; NSWOCC, FOWC and the Wound,

As an indigenous nurse, she has

works for the Alberta Health

Ostomy and Continence Institute (WOC

had many connections between

Services Home care program

Institute) are examples. Each year we pro-

culture and Western Health

in Wetaskiwin, Alberta and is

vide up to two bursaries of support to

care practices so that her cli-

part of the NSWOCC Indigenous

those graduating from the WOC-Education

ents can be more informed and

Wound and Continence Care

Program and who are becoming NSWOC

educated about the possibilities

Program. We wish Michelle all

nurses, and one Post-Secondary bursary

of a deep, rich life while living

the very best and thank the WOC

to someone entering this field. This past

with an ostomy. In recognizing

Institute for their support. n

ABBVIE IBD SCHOLARSHIP RECIPIENT 2022

Kenya Taplay BROCK UNIVERSITY

“Ulcerative colitis has changed me, but has not defined me” are words that Kenya stands by. Kenya has faced many challenges throughout her journey but has always demonstrated unshakeable resiliency. She 38 OSTOMY CANADA WINTER 2022

strives to achieve academic success as the experiences that she faced as a teen peaked her interest in pursing a career that would support children and their families, which is why she is completing an undergraduate degree in applied linguistics, speech and language sciences at Brock University with her ultimate goal to pursue a Masters in Speech Pathology. Passionate about community involvement, Kenya served on the Youth Advisory Council for McMaster Children’s Hospital for three years to help give a voice to teens and share their ideas and belongs to the Hamilton Ostomy Society. Kenya finds sharing her story is empowering and believes that connecting with others facing similar experiences helps contribute to overall health and well-being.

Kenya is an alumni of Ostomy Canada Youth Camp. She graduated from camp in 2018.

QUICK FACT: Incidence of Crohn’s in Canadian kids under 10 has doubled.

Every year, the AbbVie IBD Scholarship is awarded to students living with Crohn’s

disease or ulcerative colitis who exemplify outstanding leadership in their community and strive to maintain an optimal level of wellness. Even after graduation, these recipients continue to raise awareness about these diseases, advocate for their peers, and make a positive impact on the Canadian IBD community.

Crohn’s and Colitis Canada’s AbbVie IBD Scholarship Program supports students in achieving their academic goals while they make a lasting and meaningful difference in their communities. Every year we award $5,000 scholarships to ten inspiring students attending a Canadian post-secondary institution for the upcoming fall semester.

The program, made possible by an educational grant from AbbVie Canada, helps alleviate financial barriers, enabling students to spend more time on their studies, pursue their passions, and get involved with causes close to their hearts. n Reprinted with permission from Abbvie IBD Scholarship Program.

Advocating Together for more Support from Healthcare Leaders in Nova Scotia members of Ostomy Halifax Society for

by Cathy Harley and Troy Curtis Nurses Specialized in Wound, Ostomy attending the Summit to share their conand Continence Canada (NSWOCC) and cerns with other attendees. Their contribuOstomy Canada Society held the Nova Scotia Wound, Ostomy tions to the post presentation discussions were valuable. and Continence Summit: Supporting Sustainability at the Halifax We sincerely appreciated having discussions and learning more Tower Hotel and Conference Center. about the challenges that many in Nova Scotia are facing. We We brought together the Nova Scotia Minister of Seniors and know how difficult it can be to implement positive change within Long-Term Care, the Office of the Nova Scotia Minister of Health, a healthcare system and we commend all attendees for their roles representatives from the Nova Scotia Health Authority, as well as in taking the initiative to address wound, ostomy, and continence other key nurse managers, healthcare stakeholders, and industry issues in the province. One of our long term goals is to look at how leadership to discuss the current situation of wound, ostomy and these provincial challenge may translate to other areas in Canada. continence in Nova Scotia and to determine how we can collaborate Meeting proceedings are in development and will be available and contribute to achieving better access to specialized care while by the end of October 2022. You can obtain a copy by e-mailing supporting sustainability. office@nswoc.ca. n NSWOCC would like to thank Ann Durkee-MacIsaac, Chair of the Board of Ostomy Canada Society, for sharing the patient This article appears in the magazine as a benefit from NSWOCC’s gold perspective, which introduced new ideas for future improvement sponsorship of the 2022 Step Up for Ostomy campaign. within the Nova Scotia healthcare system. We also want to thank On Thursday, September 22, 2022,

WINTER 2022 OSTOMY CANADA 39

th

Anniversary Heroes/Ambassadors

The shoulders we stand on…

Lorne Aronson – Friends of Ostomates Worldwide Canada

As a member of the Board of Directors of United Ostomy Association of Canada (UOAC), Lorne was on the committee to transition away from UOA Inc. (US) to have membership dues directed to the Canadian entity, thus removing UOAC as a member of UOA in the United States. United Ostomy Association of Canada became an independent organization in 1997, with its first conference in the Mississauga/Toronto area in 1998. During his ten-year term as President of the Toronto Chapter, Lorne was responsible for creating a fund for local, disadvantaged individuals who had an ostomy. As well as being a Director of OCS, he also served as its President for a three-year period (2001-2004). Several years after his term, Lorne began to dedicate his volunteer work and passion to Friends of Ostomates Worldwide (FOWC) to give the gift of dignity to people in countries where access to products is difficult/impossible.

1985 the CAET (Canadian Association for Enterostomal Therapy) started the Ostomy Youth Camp. Pat participated as a volunteer counselor from 1986-87, 1990-91 and in 1992 when the CAET gave up the operations, she became the Coordinator and eventually oversaw the camp when it came under the national umbrella in 1996. Pat is also a member of the FOWC Board and Past President of NCACOA (North and Central America & Caribbean Ostomy Association). Pat was awarded the Maple Leaf Award in 2010. Pat was the recipient of ConvaTec’s Renaissance Great Comebacks Award in 1999. In her ‘spare time’ Pat likes to hike, sew, do bead work, paper craft, mixed media art, needlework, cook and travel.

Pat was awarded the Lieutenant Governor's Sovereign Medal for Volunteers in 2020.

Gwen Drew – Calgary Ostomy Society

Gwen was an ileostomate who was dissatisfied with the lack of ostomy patient care in Calgary. She applied to the Cleveland E.T. nursing program in 1967, and then became an ET; the first ET in Calgary. She, along with others, formed the Calgary Ostomy Society and they were the 25th chapter to affiliate with UOA Inc. in 1968. Gwen was the conference Chair when Calgary hosted a regional conference in 1987-88.

Eva Bordage – Moncton & District Ostomy Association

Eva joined the Moncton Chapter in the late 1980’s and has been involved as a valued member for many years. She has been a faithful participant since the beginning and has served in many roles on the Board and continues to do so to this day. Eva has been President, Treasurer, Secretary, newsletter writer and she manages the operations and affairs to the highest degree. She is wonderful to be around, and we hope she stays with us for many years to come.

Doris Crandall – Moncton & District Ostomy Association

Doris was a founding member of the Moncton Chapter in the mid-1980s and served on the Board for many years serving as its President and core volunteer to its activities. Doris was always there for the members and whenever her name is mentioned, people have such fond memories of her as being kind, compassionate and willing to help with anything the chapter was involved with.

Mark Ferbey – Edmonton Ostomy Association (EOA/Edmonton Ostomy Peer Support Group)

When people joined the EOA they were quickly made aware of Mark’s extra generosity regarding ostomates; he often held an ‘Ostomy Open House,’ his staff had displays at functions like ‘suppliers’ night’ and they attended special EOA Ostomy Day events.

He has been a long term and committed supporter at multiple fundraising events. Mark established and sponsored Edmonton Ostomy Association’s (EOA) website which now exists as the “Edmonton and Area Ostomy News” web bulletin board to keep people informed about current ostomy news, updates about Ostomy Canada Society, FOWC, COVID, and the newly formed EOPSG along with ‘Access to AB Health Care’. The Edmonton community is very appreciative of Mark and his passion for ostomy support.

John D’Eon – Southwest Nova Scotia Ostomy Chapter

Pat Cimmeck – Calgary Ostomy Society

Pat’s resume is quite impressive. Her Calgary Chapter experience covers almost thirty-five years, with her holding such key roles as being the Visitor coordinator, trainer and making visits spanning a 33-year period. In Calgary she served as its secretary for two years, Vice-President for two years and President for 27 years. Nationally, Pat served on the now OCS Board from 1993-97, Secretary from 1999-2002, Vice-President from 2002 –2004, President from 20042006 and held various editorial roles on the OCS Magazine. In 40 OSTOMY CANADA WINTER 2022

John was a long-time member of Southwest Nova Scotia Ostomy Chapter. John had his ostomy at a very early age and used his experiences over the years to help educate others. He had the greatest stories to tell about the old appliances and about rolling on the floor from the pain of blockages because he ate things that he should not have. He was an Atlantic fisher and worked extremely hard his entire life, even with a stoma. John once fabricated a machine used to cut the hole in his wafer. In his early days one could not purchase a wafer with a hole in it. You would have to measure your

stoma and cut it to fit. He would bring it to our chapter meetings to demonstrate. We lost a good man when he passed but his memories will live on.

Peter Folk - Saskatoon Ostomy Association

Peter has been responsible for the chapter website since 2003.

Having kept up with social media, he constantly improved the website. He served as Chapter President for two years, and for many years as the Chapter’s Newsletter Editor. For the last five or so years (2017-2022), he has been the Chapter Secretary. Peter brought his choir to some Christmas parties where the members were encouraged to sing along. Peter was active in UOAC (now Ostomy Canada), serving on the UOAC Board of Directors, UOA Connection Committee Chair, and UOAC Website Committee Chair. He was a Board member for four years, then President for three years (2006-2008), then he went back to being a member of the board member for another two years. During his term as President, UOAC was rebranded as Ostomy Canada Society. Peter was the recipient of the Maple Leaf Award in 2019.

Dianne Garde - Ileostomy Association of Toronto

Dianne had her ileostomy surgery in 1959 and soon joined the Ileostomy Association of Toronto (which had only formed one year earlier). At that time, there was the Toronto and District Colostomy Association so both groups decide to merge in 1982 under the name of Ostomy Toronto. Dianne was the third ET in Canada. At that time to be an ET, one needed to have an ostomy and have a job commitment to be able to take the ET training in the US at the Cleveland Clinic. She completed her training in 1969. In 1975 Dianne organized the first ET conference in Toronto, as well as the IAET (International Association of ET) and numerous other educational forums over the years. The highlight of Dianne’s career was being part of the 1990 planning committee for the WCET (World Council of ET) with 900 people from 55 countries attending. Dianne worked at Toronto General Hospital from 1969-1992 and at Starkman’s Surgical Supply for 40 years. Dianne continued to see people with ostomies until December 2020. She estimates she has helped over 12,000 people with ostomies over her career.

Dianne received the NSWOC Recognition Award in 1999. (Note: an ET is now called an NSWOCC).

Carol Gibson – Ostomy Muskoka

Carol was the force behind the opening of the Muskoka Chapter in 2009. For 13 years she has faithfully served as its President.

She organizes monthly meetings, guest speakers, keeps members informed about Ostomy Canada and about other key programs.

She always offers her support to make visits to others who have an ostomy. She has attended conferences and participates in ostomy walks and events. All chapter members know she is there to support them at any time.

Helen Manson – Surrey/Vancouver, BC

Helen was an exceptional nurse who had ileostomy surgery in early 1970. She took her ET training in the early 1970s at the Cleveland clinic (the only place at that time for ET training). Helen was a dynamic, innovative, entrepreneurial, and committed individual who started the ostomy clinics at Vancouver St Paul’s and Surrey hospitals, as well as starting the support groups in Surrey and Vancouver. Mother of our current Board member Andrea (Andy Manson), Andy remembers her mom had a letter from a newspaper who she contacted to promote a support group meeting, and the newspaper refused, saying due to the sensitive nature of the topic they would not publish information about the meeting. No talking about poo and pee in the 1970’s!

Fran Midgley - Ostomy Muskoka

Fran was a charter member of Ostomy Muskoka. She had an ostomy for more than 50 years and always lived life to the fullest. She had the most positive outlook and was willing to help others. She always ended the chapter meetings with a joke and a smile. She was an amazing fundraiser and always found special and heartfelt gifts for the December holiday meetings.

Susan Nickerson - Southwest Nova Scotia Ostomy Chapter

Susan is our chapter’s President and has been for at least 17 years.

She is from a small French community in Southwest NS and works in a Senior’s Home. She has the biggest heart one could ever have.

Susan bakes 15 to 20 loaves of bread at a time and delivers them free of charge to the ladies who live in her village who used to make bread but no longer can. She is the first to travel everywhere for an ostomy visit and often shares with people what it’s like to live with an ostomy (for her, since the age of sixteen). Susan has had many surgeries; even to have it relocated three times and still she smiles every day without a complaint.

Richard Olley – Halton Peel Support Group

Richard is currently the President of the Halton Peel Support and is known as a tireless worker and a champion of the group; even when he is away in Arizona during the winter months! Richard embraces a ‘can-do and will do’ attitude on almost any matter. He is a strong advocate for community support, as well as passionate about his work with Friends of Ostomates Worldwide Canada. Richard is never afraid to help to package kits, load pallets and help to get them shipped to places around the world where they are needed most.

Agnes Parisloff – Regina and District Ostomy Society

Agnes Parisloff has worked tirelessly keeping the Regina Ostomy Chapter active and vibrant. Agnes had her surgery in 1980. Very soon after surgery Agnes became involved with the chapter, first as Secretary and then as President for 15 years. In total, Agnes has WINTER 2022 OSTOMY CANADA 41

th

Anniversary Heroes/Ambassadors

been on the executive for the past 35 years! She has attended numerous national conventions and encourages others to attend with her.

She was on the organizing committee for the Regina Stoma Stroll/ Step Up. Like her predecessor, Al Wolf, she has been a part of the visiting program for many years. With her kind and friendly way, she offers people support and encouragement so that they can live their lives to the fullest.

Daryl Perry – Ostomy Newfoundland and Labrador

Daryl was President of the Exploits Satellite Chapter of Ostomy Newfoundland & Labrador from 2016 to 2020. He was the driving force behind getting this Satellite Chapter up and running in Central Newfoundland. He was very passionate about helping everyone living with an ostomy and was known around the group as being someone you could rely on to get things done in a caring capacity.

the chapter was struggling and was in danger of folding. Older executive members were retiring, some had passed away and no new people were stepping up. Debra recruited a new Membership Coordinator, Youth Camp Coordinator, Secretary and President.

Debra became Vice-President in 2007 and President in 2009, a position she has held ever since. She has been the Newsletter Editor for 19 years, Visitor Coordinator (six years) and revamped a new website for the chapter in 2005. In 2006, Debra wrote, compiled, and produced "A Handbook for New Ostomy Patients" in response to a lack of peer support for the ostomy community. The booklet was written by ostomates, for ostomates and is currently in its ninth printing, with over 8,000 copies in circulation. The handbook is now adopted by organizations in Canada and the USA, (Boston University School of Medicine, Toronto, and Hamilton Chapters).

Debra was the 2007 recipient of ConvaTec’s Renaissance Award.

Muriel Roop, RN, ET - Calgary Ostomy Society

Allan Porter - Hamilton & District Ostomy Association

Every organization has someone in their history ‘who done good!’

Allan Porter founded the Hamilton & District Ostomy Association in April 1968 and devoted his life to ostomy awareness until his passing at 77 years of age. Al spearheaded the move to form a wholly Canadian Ostomy Association in 1982. The new ‘United Ostomy Association’ Canadian office was in Hamilton and Al was the office Co-ordinator for 12 years. Known internationally, Al attended North American and International Ostomy conferences. He was the first Canadian to be awarded the highest honour by receiving the Sam Dubin Award from the US based United Ostomy Association.

He was the first editor of the Canadian Ostomy Newsletter which evolved into our Ostomy Canada Magazine. Al was a founding member of what is now Friends of Ostomates Worldwide Canada (FOWC). The highest award FOWC bestows is named in his memory. You done good, Al! Pat Ramage - Saskatoon Ostomy Association

Pat oversaw and managed a number of key aspects when the Saskatoon Ostomy Association hosted the Chapter Information Session in 2011, which was well attended by chapters across Canada. During the session, strategic planning started which eventually resulted in the name change from UOAC to Ostomy Canada Society. Pat and her husband, Ray, attended many UOAC conferences and served as excellent ambassadors of our organization.

World Ostomy Day in Saskatoon on October 2009 was, celebrated with bowling and a pizza night. Pat served as President from 20082011. She organized the 35th-anniversary celebration in May of 2009. Pat was also actively engaged in the visitor training sessions; a role in which she was highly respected.

Debra Rooney – Vancouver United Ostomy Association

Debra began volunteering with the Chapter in 2003, first as the Newsletter Editor and then as the Visitor Coordinator. At the time, 42 OSTOMY CANADA WINTER 2022

Muriel was an ET nurse in 1984 in Calgary. She, along with Gail Hawke, an ET in BC and Grace Lavergne, an ET in Calgary, started the Ostomy Youth Camp in 1985. The camp was a CAET (Canadian Association of Enterostomal Therapy) program until 1991. The camp ran as an independent program until 1996 when it came under the UOA Canada Inc. umbrella. Muriel embraced a wonderful sense of humor, as well as a positive sense to try and do anything to solve problems. She loved shoes and driving her Mercedes convertible.

Ray and Sybil Rynor – Stratford & District Ostomy Association

Ray was initially the Chapter Treasurer in 1983, then became Chapter President in 1985. He helped to 'grow' the Chapter by setting up a visiting program with the Stratford Hospital and facilitated every aspect of the program. He made initial contact to a new ostomate by taking the gift of a plant to their hospital room.

Follow-up visits and information on the chapter usually resulted in a new person taking membership. Ray was enthusiastic about our work in the community and would do what he could to support it.

Sybil Rynor - Always supporting her husband, Ray, since his ostomy surgery in June 1983, she was the initial Chapter Secretary and the Newsletter editor. She also was a visiting 'non-ostomy spouse' partner with Ray when they visited a new ostomate in the hospital.

You could find Ray and Sybil at various events helping wherever they could.

Judy Steeves – Fredericton and District Ostomy Association

Judy's contributions as an advocate for ostomates for twenty plus years are many. They include her passionate work as a Visitor and motivating others to live life to the fullest, as a leader and advocate throughout the Atlantic provinces seeking more support for ETs/ NSWOCs, as a fund raiser supporting the chapter activities (printing, events, outreach) or national programs such as Youth Camp and SASO. Judy served as the ‘District Support Services’ Atlantic

representative and held various positions locally, regionally, and nationally. If it needed doing, Judy was one of the first people to say yes! In recognition of her outstanding contributions, Judy received The Maple Leaf Award in 2002, the President's Award in 2005, and the ConvaTec Renaissance Great Comeback National Ambassador Award in 2008.

Annette Weidenfeld – Southwest Nova Scotia Ostomy Chapter

Annette has been involved with Ostomy Canada Society for many years and is a past recipient of the Maple Leaf Award in 2009. She was a founding member of Southwest Nova Scotia Ostomy Chapter and served as President for over 30 years. She had her surgery when she was young and recovered while taking care of her young children. She has a helpful hand in whatever she does like visiting people before and following surgery, home visits and just sharing a walk on the beach. She believed that these visits were so valuable for our ostomy people. She is involved in her community, both in her schools and her church. She played Mrs. Santa alongside of Mr. Santa (her husband) for over 40 years. She is a tough lady of over eighty years old. It was not long ago since she packed her gun and headed for the back woods for her deer.

Carol Wells - Ostomy Newfoundland and Labrador

Carol has been a member of Ostomy Canada since 2011 and then became Ostomy Newfoundland & Labrador’s President after attending her first meeting in 2012. The group’s members keep telling her to never give up! The group depends on the executive a lot and they love being there for them for support, social interaction and sharing. The chapter has grown a lot since the early days and are known within the health care system as a group they can depend on. On a national OCS level, Carol served as its Secretary for many years, as well as holding many other positions at a national level.

Carol loves to sew and spend time with her family.

Ivor Williams – Vancouver United Ostomy Association

With Ivor’s passing, the Vancouver Chapter lost one of its most devoted members. Ivor was a special person who led an exemplary life as a family-oriented person, and model citizen., Although not himself an ostomate, Ivor accompanied his wife Joan (herself a member of the Executive Committee since 1972) to chapter meetings and volunteered for countless hours. He functioned as Treasurer of the UOA 1980 National Conference in Vancouver and was the Program Coordinator of UOAC’s 2001 National Conference in Richmond. He was a member of the Vancouver Chapter Hall of Fame and a recipient of the Vancouver Chapter’s Outstanding Service Award. Faced with the demise of the chapter in 1989 and after serving as Chapter Treasurer and Chairman of the Memorial Fund Committee, Ivor agreed to serve as President in 1989-90, 1990-92, 1997-98 and 1998-2000. In addition, he volunteered as the Editor of the Vancouver Ostomy Highlife from September 2000 to April 2003. Without Ivor’s dedicated volunteer

service, there is little doubt that the Vancouver Chapter would have folded.

Joan Williams – Vancouver United Ostomy Association

Having had an ostomate visitor after her surgery in 1972, plus receiving enlightening literature from the local chapter, Joan felt a need to give something back. She started out helping with the refreshments at meetings, and through the years, fulfilled positions in the chapter. She has done a lot of visits to new ostomates, has functioned as Visiting Coordinator, and has spoken to nursing students at UBC and Langara College. She has maintained the library of brochures, booklets and edited the newsletter when nobody else would do so. Joan co-chaired, with Lottie Calli, the Hospitality Committee at the 1980 UOA Conference in Vancouver. She has organized Christmas parties, frequently functioned as Secretary, and currently calls members to remind them of upcoming meetings. For over thirty years, she was always available to fill in wherever needed.

Al Wolf – Regina and District Ostomy Society

Al had surgery in 1965 and at that time there were no stoma nurses or support groups. While in the hospital he received a copy of the Ostomy Quarterly and was soon contacted by the United Ostomy Association to set up a Chapter in Regina. The chapter was born in 1974. Al served for several years as President (its very first) followed by overseeing the local Visitors Program. He was appointed as the Saskatchewan representative by U.O.A. in 1976 to 1978. He remained active as an educator speaking with the media and nurses about living with an ostomy. He was frequently asked to visit patients and was able to quell their fears and offer some reassurance that, “I am fine, you will be too.”

Raymond Woods - Miramichi Ostomy Group

As a founding member of the Miramichi Ostomy Group, Ray was involved and very active in the association and was a very fine gentleman. He always went above the call of duty. He and his wife Agatha, would organize yard sales and a ‘Hootenanny’ as fund raisers for the group. Before every monthly meeting he would arrive a few minutes early, and put the coffee pot on for everyone to enjoy.

Agatha would send along some cookies. He was such a caring individual and always welcoming. Regrettably, we lost Ray on July 22, 2022, he was 93 years old and will be missed.

Note – Ambassador submissions were solicited on multiple occasions by the OCS office and were of various length and ‘voice’.

Several outlined extensive and lengthy accomplishments. In some cases, we needed to edit content, and thus apologize for any details that were shortened. Rest assured these individuals and many are the true reasons why our organization is filled with success, passion, impact, and commitment to the Mission. We are also certain there are many other wonderful ambassador stories that were not submitted. n WINTER 2022 OSTOMY CANADA 43

Our History

C W O F e h t f o y The Histor

by Lorne Aronson

In late 1982, the Canadian and US chapters of the United Ostomy

Association Inc. based in the United States initiated a program to help needy ostomates in less fortunate countries. Ostomates in underdeveloped countries were stigmatized and sometimes forced from their homes and ended up living on the streets because of their offensive odour. The primary reason was that up-to-date, odourproof pouches, were either not available or were too expensive for the majority of the poorer people. These unfortunate people were forced to improvise, using homemade appliances such as plastic bags, rubber gloves, pieces of old tire inner tubes and in some cases even half coconut shells. These makeshift appliances were usually fastened to their body by some type of rubber belt or cords. There was virtually no seal between the stoma and the appliance and the odour and skin irritation was a fact of life for these people.

Thus F.I.O.A. or “Friends of the International Ostomy Association” was formed and with the help of Louis Raffio, Barbara Rock and others, this association was incorporated in the United States and received a charitable number. On September 8, 1987 Revenue Canada declared Friends of the International Ostomy Association (Canada) (FIOA (Canada)) to be a charitable association retroactive to January 1, 1987.

At this time Maria Siegl was Chair of the International Relations Committee of U.O.A. Inc. and she was asked if she would take over the entire responsibility for overseeing the organisations in both the U.S. and Canada. Very soon donated supplies started to come in and a place was needed to store them. The first collection centre in Canada was situated in the premises of the Hamilton Chapter in Hamilton, Ontario with packing done at a warehouse.

Other participants, namely Les Kehoe (Director Retired), JeanPierre Lapointe (Director Retired), and Richard Olley (Director) collected supplies and stored them at their own homes.

Early in 1987 the I.O.A. requested that the F.I.O.A. change its name to eliminate the International Ostomy Association component as this was causing some confusion in the international community. F.I.O.A. (Canada) chose the name Friends of Ostomates Worldwide (Canada) and applied for Supplementary Letters Patent.

The name change was accepted and verified by Supplementary Letters Patent dated April 13, 1988. This was followed by a letter from the Charities Division of Revenue Canada acknowledging the name change. Thus our current association came into being.

The first Directors of F.O.W. (Canada) were: Maria Siegl, Allan Porter, Sheelah Zapf, Bette Yetman, Dorothy Pinkney, David Metcalfe and Claude Campbell.

From 1982 until June of 2019 the sorting and packing was done at the Hollister Canada warehouse facility in Aurora Ontario.

Supplies were transferred to Aurora each time a sort and pack was organized. In 2019 Hollister changed to a third-party distribution 44 OSTOMY CANADA WINTER 2022

operation. FOWC had to find new premises. Friends of Ostomates Worldwide (Canada) is very grateful for all the help over those many years and for Hollister’s continuing support.

In September of 2019 FOWC began to collect, store, pack and sort from a mini storage facility in St. Catharines Ontario organized by Vice President John Molnar. Recognizing that this was only a short-term solution, the Board of Directors voted to find a better option. A shared space of five hundred square feet was found and FOWC moved in; however, this also was not a good fit. In 2021 a rental unit located nearby having some fourteen hundred feet became vacant and the Board of Directors decided to rent this facility. John Molnar and Richard Olley took the responsibility of preparing the facility. Painting, putting up shelving, etc. was completed and in October 2021 an open house was organized. Since then, several shipments have been sent from the new facility, and donations of surplus products have been received.

Over the past ten years FOWC has been concentrating on shipping large amounts of supplies to three countries: Kenya Ukraine, and Iran. As well, by collaborating with other like organizations we have supplied ostomy supplies to Uganda Uzbekistan, Nigeria, and Zimbabwe, to name a few. Collaboration with other humanitarian organizations has enabled FOWC to successfully send two shipments to the Ukraine since the war began there in February 2022.

Over the past forty years we have sent (free of charge with shipping included) hundreds of thousands of dollars of ostomy supplies to the neediest of people around the world. As well, this has kept surplus supplies from going to landfills. FOWC is grateful to all its past and current donors, and for the support it has received from Canada Gives, from Ostomy Canada Society, and from individual chapters and support groups. We cannot continue to do this work without your help, both financially and through donations of surplus ostomy goods. We invite you to visit our website at www.fowc.ca and to become a FOWC Champion. n Lorne is the President of Friends of Ostomates Worldwide (Canada)

Consider Giving the Gift of Dignity!

Your dollars give people Quality of Life!

Yes, I would like to improve the life of needy ostomates worldwide by applying for the following membership/donation: Je souhaite faire un don/adhésion pour aider les personnes stomisées du tiers-monde : m Individual/Don individual: $30.00 m C orporate/Don corporative: $100.00 m I ndividual Patron/ Don de patron individual: $50.00

m C orporate Patron/

Name/Nom _______________________________________________________ Address/adresse ___________________________________________________ ­­­­__________________________________________________________________

Don de patron corporative: $250.00

m P lease accept my donation of/ Accepter mon don de: $_______________

m C hapter, Group or Association – $1.00 per member to a maximum of $150/Chapitre, Groupe ou Association – 1$ par membre à un maximum de 150$

City/ville _________________________________________

Province _______

Postal Code/Code Postal ________________ Phone/téle ________________________________________________________ Email/courriel _____________________________________________________

“

In Canada nobody has to wear rags, or plastic bags, as can and DOES happen in third world countries. For some folks overseas, the supplies that reach them through us and organizations like FOWC (Friends of Ostomates Worldwide Canada) are the ONLY supplies they will get, period. The rest of the time they make do, or avoid others for fear of offending.

In a perfect world, we’d all have all the supplies we wanted, all the time (actually, in a perfect world, no one would require an ostomy in the first place!)

Give thanks for the health care and products we do have, and be proud of being able to assist others who have so little of our good fortune.

Official receipts for tax purposes are issued for all cash donations, regardless of the amount.

Un reçu officiel aux fins d’impôts sera émis pour tout don en espèce, quel que soit le montant.

S.V.P/POSTE/MAIL TO/Á: Friends of Ostomates Worldwide Canada

P.O. Box 158, Pine Falls, MB R0E 1M0 Tel: 647-951-3940 or/ou email: info@fowc.ca

”

Donate online at www.fowc.ca

Ostomy Specialist

by Brian Meloche as told to Ian MacNeil

When I was 19 years old, I had my

experience to share, I was able to proostomy surgery. I was sick with ulcervide a unique perspective to patients ative colitis between the ages of 13 and undergoing ostomy surgery.

19, probably the hardest years of someAt that time, the ostomy comone's life. I was so sick; I was only 89 munity was quite small. Word got pounds on the day of my surgery. It around that there was an ostomy spewas December 10, 1965. The surgeon cialist in the area. I travelled to North was a professor of surgery in Montreal Bay, Belleville, and to Kingston. I visat the Royal Victoria Hospital. At the ited patients in Montreal and Ottawa end of 1969, I took his encouragement hospitals every week. I also travelled and went to the Enterostomal Therapy across Eastern and Northern Ontario training programmed in Harrisburg, on a bi-monthly basis. One of the Pennsylvania. I graduated mid-sumlocal Ottawa surgeons had a colleague mer of 1970 and became the world's in Belleville who needed help, as there first male ostomy therapist. Originally was no one there with any ostomy a Montreal boy, I moved to Ottawa. I was given a referral to Dr. experience. When I saw the patient at the bedside, I’d ask the nurses Beady, who was the chief of surgery at the Civic hospital. He said on the ward to take time out of their busy schedule to follow me on that he would make sure that I had a lot of work to do. my rounds. I would show the new patient how to put on their ostoWhile in Harrisburg, the first thing I was told was that when my appliance, and answer all their questions. The nurses benefited you go back to your local town, be sure to start an ostomy club. from our shared visits. They in turn also shared what they learned With the help of my wife Nancy, and a few with other nurses in the hospital. others, we started what is now the Ottawa I lectured at both the Ottawa Hospital The surgeon was a Ostomy Support Group in 1970 and it is nursing school, and at Algonquin College. professor of surgery in still going strong today.

There would frequently be over 50 stuMontreal at the Royal Victoria Several doctors from the Ottawa hosdents in the class. Lectures were three pitals used to call me to see their patients. hours long and at break time, I handed Hospital. At the end of 1969, I would go and see that one patient, but I out flanges and pouches for each one of I took his encouragement knew there were other patients in the hosthe participants and asked them to go to and went to the Enterostomal pital who might benefit from my training. the washroom and put them on. I gave Therapy training programmed At the time, in order to reach a doctor or a instructions to add a little water, and to nurse, a paging system was used. For examkeep it on for 24 or 48 hours or until the in Harrisburg, Pennsylvania. ple, the receptionist would say, “paging Dr. next lecture. I randomly put pinholes in I graduated mid-summer of Smith, go to seventh floor”. To get around a few without mentioning it to the stu1970 and became the world's the system, when I was seeing a patient, dents. Once we were back in class, the I used to push a button to page myself. I affected recipients of the pinhole bags first male ostomy therapist. would say, “could you page Brian Meloche would squirm and then complain about to see a patient on the seventh floor?” Needless to say, I had already their bags leaking. I asked how it felt. Most described some embarseen the patient. Once other nurses and doctors heard that I was rassment and or discomfort. I confessed to my transgression; howin the hospital, I soon would be hearing, “Brian, go to number ever, I explained that this is how a person with an ill-fitting applithree urology; can Brian go to general surgery, number five, to ance would feel. The exercise emphasized the importance of ensursee a patient?” One patient led to two; two led to four and it just ing he/ she properly teaches how to correctly fit an appliance. I also spiraled. My theory at the time was and still is to, ‘treat the patient felt that this ruse made the student nurses more empathetic to the in the beginning with kindness and no BS.’ Because I had the life challenges that ostomates faced.

46 OSTOMY CANADA WINTER 2022

To this day many patients who I see are still confused. While in

the hospital, they may be heavily medicated. They may receive what appears to be conflicting or inconsistent responses to their questions or they may recall only part of a response. My priority was to ensure a consistent message on how to change their flange and take care of their skin, and if they adhered to my advice, they would never have to see me again. After a visit and training session, the patient will usually have the confidence that their ostomy appliance wouldn’t leak, wouldn’t smell and wouldn’t fall off. I recommend a change every three to five days and then to carry on with life. I still see ostomy patients on a regular basis and follow the same plan. I am not here just to sell product. If a patient complains that their flanges or bags aren’t working, I would review their practices and if necessary suggest tweaks or alternative products as there can be negative reactions to some product composition. The biggest challenge that I encounter as an ostomy therapist from my point of view is with the surgery itself. The stoma has to stick out from the abdomen, the stool has to go into a pouch and if it doesn’t, the patient would invariably face skin and wear challenges. In emergency surgery situations, such as diverticulitis, the bowel explodes, and when the surgical team has to act quickly, the patient may end up with a short stoma. The end result is that the patient will be faced with skin issues. When I did post-surgical rounds with surgeons, at Queens University and Ottawa Civic Hospital, I reminded the doctors to ensure that the stoma is placed in the correct area (just below the

belly button) whenever possible and to ensure the stoma isn’t sitting flush with the skin. These days with modern appliances and barriers, if the surgeon addresses these issues, there should be no skin problems. However, changes in the patients’ health, weight, lifestyle etc. can sometimes negatively affect an excellent procedure. In the 1960s’and 70s’ skin issues were my number one challenge.

I started my business by cashing in an insurance policy of $500 that my parents had on me as a baby. I bought my first piece of stock to sell through Canada Care Medical. In those days, we would have to mail to the USA to get ostomy equipment and with postal strikes, incorrect sizing, and a host of other issues, I felt that equipment should be available locally. Consequently, I started the Ottawa Ostomy Centre.

The lack of choice and high cost of equipment really bothered me. With equipment continuing to be so expensive over the years, I tried to as much as possible to find alternate products that I could develop myself, which I labelled Canada Care Classic. Industry Trade and Commerce paid me to visit Germany to seek out alternative products. There was a fellow there manufacturing ostomy supplies and together we developed some new products. I brought back some quality ostomy products which cost less than the ones from American suppliers. I started with my own ostomy paste and over time had my own brand of flanges and pouches which sold at a fraction of established prices. I also published step-by-step instructions booklets in order that ostomates have a reference on hand or new

WINTER 2022 OSTOMY CANADA 47

ostomates had needed instructions.

Someone told me that barrier rings were a little bit better than paste. Well, I am a little old school and I prefer paste, but to each their own. Many of my clients are very cost conscious and rings are considerably more expensive. Additionally, I can usually get the problem solved with good stoma paste. I also find that rings raise your appliance a little higher, and can be problematic unless your stoma really sticks out. It creates a different dynamic on your abdomen. But if it works for you, great!

Appliances have changed drastically over the years. Here are a couple of examples.

the tighter the belt, the more secure your appliance would be. After about 10 or 15 years, I questioned the validity of this practice, so I went a weekend without my belt and my appliance remained firmly in place. Unless there is a need (hernia, weight or other), I found that belts were optional. Even though I have not worn a belt for at least 30 years I still have an indentation right across the small of my back.

The use of hydrocolloids was a game changer for the ostomy com-

munity. Hydrocolloids were first used in dentistry in the 1930s and 40s. By the early 1960’s hydrocolloid’s properties of being moisture retentive and adhesive, as well as its properties of allowing the skin to heal, were well documented. It was patented in 1967. One of its first uses was in stoma care and it is now the gold standard.

Around the same time, I also heard that a variation of early hydrocolloid paste material was used for both dental bridgework and to stop bleeding in the hole upon tooth extraction. Again, the properties took the shape of its surrounding, was waterproof and promoted healing. This paste was the precursor of stoma paste which is still used today. Today’s ostomy products are much more comfortable, odorless, malleable, forgiving and at the same time better manufactured to address adverse skin problems and body shapes.

In the old days, most patients were embarrassed by the fact that they had ostomy surgery even though the surgery saved their lives.

I've seen a gradual change over the years; not just because I am in the business. It is gratifying that the stigma of ostomy surgery is slowly disappearing. In my life as a businessperson, I never worked The top one is the type of appliance that for anyone else in my life. I was 19 when they put on me at the Royal Victoria I came out of my surgery. I started proIn the old days, most patients Hospital. This was 65 years ago. It was viding ostomy support because of my surwere embarrassed by the fact a piece of polyethylene. They would cut geon. Few people had heard of an ostothat they had ostomy surgery the hole, peel the backing off, and put it my specialist, let alone what we were all even though the surgery on your skin. Once it was on your body, about. Today with NSWOCC, there is an you would make sure that you folded the understanding of both the need and value saved their lives. I've seen end over once, twice, three times, cleaned of the profession. I had no way of proa gradual change over the it and put your elastic around it. They moting myself. I understood if I didn't years; not just because I am worked; however, the problem with this promote myself and my skills, no one else first of all was that it was crinkly. Secondly, was going to it. I didn't have a budget in the business. It is gratifying they were very smelly. Eventually I created for advertising, so the only way I could that the stigma of ostomy my own deodorant to counteract the smell. do things was through word of mouth by surgery is slowly disappearing.

I must confess that I used ingredients that being nice to people, which I am anyway. would not be acceptable today. The second I had to exert my personality and keep picture is an old urinary appliance. It was made of rubber. Rubber telling everyone how great I was. I'm not joking. Once patients would take on a bad smell, and after a year, you wouldn’t want to had confidence in my abilities, they would tell other people about get close to it. this guy who had helped me. I have so many patients whom I have The solution to sore skin at that time was Karaya washers. grown attached to over the years, many who have now passed away.

Karaya came from the resin of a tree found in Asia. It's similar to They liked me and I really took a liking to them. Just last week I the rings that you're using now, but it came in a big slab; salty and was at a funeral mass and a lady approached me and said, “are you very rubbery. You would put it on the skin and it would heal the Brian Meloche?” I responded yes. She said, “you taught me in nursskin; however, they melted down in 24 to 48 hours into a jelly thus ing school 35 years ago and you really opened my eyes.” It made me appliances needed to be changed frequently. Patients were having so proud that I was able to make a positive impact on her, so much a hard time cutting the Karaya rings, as they were not precut. We so that she remembered me after all this time. Such rewarding feedsourced cutters to match your stoma so you could cut your own hole back really makes it all worthwhile. n to match your stoma size.

Back then, all ostomy patients wore belts. The theory was that Brian lives in Florida, USA 48 OSTOMY CANADA WINTER 2022

My Personal Story I have a Urostomy

by Steve Smith I have a Urostomy! The

first hint of trouble was in the Fall of 2017 when I had some blood in my urine. My doctor determined that it wasn’t an infection and sent me to see a urologist. After an ultrasound and blood tests, it was decided to do a CT scan of the abdomen.

This scan showed the need for a cystectomy which showed carcinoma in situ. After many more tests; MRI, bone scan and X-rays, it was decided that a transurethral resection of a bladder tumour or (TURBT) was needed in order to get biopsies. The TURBT showed pre-cancerous cells in my bladder and BCG treatment was suggested. Before this could be started, they found a tumour on my right kidney that they thought was cancerous. Since I had good kidney function, it was decided to remove my kidney; that surgery occurred in April of 2018. About four weeks after the kidney surgery which was indeed cancerous, I started BCG having treatment every week for six weeks. Another cystoscopy in July showed that I had new tumours in my bladder that would need another TURBT. This procedure showed Grade 3, Stage T1 aggressive bladder cancer. Late in the Fall, another cystoscopy and TURBT confirmed previous cancer results that was not yet muscle invasive but was getting close. Chemo and radiation are done only if the cancer is muscle invasive so I elected to have my bladder removed. Surgery was done in April of 2019 for a radical cystectomy where the bladder and prostate were removed. I now have an ileal conduit or a urostomy. In the Fall of 2019, I elected to attend some meetings of the Niagara Ostomy Association. I joined this group as they had some good speaker presentations and I got some very good tips on how to manage my ostomy.

In the Fall of 2019, a lump appeared on my neck and after needle and surgical biopsies, it was determined that I had Diffuse Large B Cell Lymphoma. After more bone scans, CTs, bone marrow tests, lung and heart tests and a PET scan, in February of 2020, I underwent a course of six chemotherapy treatments. I had one every three weeks until more scans and testing showed the lymphoma to be gone. I will be followed for five years with regular CT scans and bloodwork and discussions with the oncologists to discuss the results of which. All in all, I had excellent post surgical care from my surgeons and nursing staff at Joseph Brant hospital in Burlington and from the oncologists and nursing staff at the Walker Family Cancer Centre in St. Catharines where I went for the chemotherapy. I am also very supportive of the Bladder Cancer group in Hamilton and from the Niagara Ostomy Association for the ongoing support that each group offers. n Content reprinted with permission from Niagara Ostomy Association It’s in the Bag March 2022 Steve is Niagara Ostomy Association’s Director/Interim Secretary

A Full-Circle Gift of Happiness

by Sue Lorenz and Lisa Gausman I, Lisa, received a message from the Ostomy Toronto Presi-

dent who had received an email asking if he knew of any children who would benefit from being gifted a Stoma Bear.

Sue wrote, I have a stuffed animal that has a stoma on it that was made for a little girl who is having difficulty with dealing with a stoma. Do you know of any little girl who would benefit from this to help her get through it?

My curiosity led me to ask a few questions and Sue replied, “I bought the bear from a lady in Australia who makes them. I bought two to give away to children. One of them I sent to Ireland to a child who was having a lot of health issues and wanted a bear. The other one I would like to give to a little girl who is having a difficult time with a stoma. Maybe it will help her! I have an ostomy myself and wanted in some way to help children through it! I received my ostomy nine years ago due to being diagnosed with Crohn's disease when I was a teen.

Having had previously published a story in Ostomy Canada about a lady in Australia who made Stoma Bears I prodded a bit further and Sue replied, “Yes I did buy it from Kelly Moss.

The bears she makes are adorable! I hope this bear gives the little girl some hope and I want her to know that she can do anything, anything at all with her ostomy. And for it not to let it stop her! I hope and pray it helps the little girl in her recovery. No child should ever have to go through that.

Arrangements were made via a Pediatric's NSWOC at McMaster Children’s Hospital and a lucky eight-year-old girl now has her very own Stoma Bear to snuggle with.

About Sue - My name is Sue Lorenz and I have had an ostomy for over nine years due to having Crohn’s disease since I was 15 years old. Since having my ileostomy and being diagnosed as a teen with Crohn’s, I have made it my mission to help children deal with Crohn’s disease and an ostomy. Since I received my ostomy there is no more pain and I can live life to the fullest. To help children I bought ostomy bears to show children they are not alone!

Even though you have an ostomy you can and you will achieve wonderful things! Never let the ostomy stop you from doing whatever you would like to do in life! It will make you stronger and braver! Believe in yourself! n Sue lives in Toronto, ON.

WINTER 2022 OSTOMY CANADA 49

Rocky Mountaineer

by Jerry Exner

was time to do a change. I went to the WC and I mean ‘C’ it was like a ‘closet’ (ed. note: WC is British term for water closet / toilet).

My Coloplast clip came in handy. During the change I noticed that the bottom of my flange was lifting. I had to take action. I did not want to have a leak on the plane. I went back to my seat to get a Brava strip. I went back to the WC and got the strip on for safety.

It must have been a result from all the sweat from the extra walking that caused the problem. The Vancouver airport was a breeze.

We got on the SkyTrain to head downtown and to find a hotel. We did not have a good map to the hotel and went a few blocks in the wrong direction. A little tired and weary, we found our way. At the desk, they could not find our reservation. The hotel has two towers so the north tower sent us to south tower to see the manager. We

June 15 – Our son Will picked us up at home in Calgary just before

10:00 am for the drive to the airport. We had lots of time. Our flight was at 1:30. Everyone was wearing masks, we did self-checkin, dropped off our bag and went to security. There were only about 20 people in front of us. I asked if I needed to take my suspenders off. The first person said no. I went through the screen and it beeped. The security agent asked another agent to come over to check me out. He would not let me go through again without suspenders. He ran the wand over me and poked around; he did not find nor ask about my bag. He then asked me to stand up against the wall so he could check my feet. I lifted one then the other and jokingly asked him if I had stepped in any dog shit. He said no and we both had a little laugh. We were then on the way to our gate. We went into section A, but we were supposed to go to section C. After a long and quick paced walk, we raised a little sweat but we found our way. After we sat down for a short rest, we looked for some food.

I had a spicy sausage dog and Wendy had a chicken burger. It tasted okay, for airport food. We waited a little while until our plane was ready to board. The plane was mostly full, and everyone was wearing masks. I had let some gas out from my pouch earlier but now it 50 OSTOMY CANADA WINTER 2022

I asked if I needed to take my suspenders off. The first person said no. I went through the screen and it beeped. The security agent asked another agent to come over to check me out. He would not let me go through again without suspenders. He ran the wand over me and poked around; he did not find nor ask about my bag. had all the paperwork except for the reservation number. In the end he found it and gave us a nice king room. We got settled in, it was now time to eat, even though we were still a little full from lunch.

We were too tired to look anywhere else, so we went to the hotel bar for drinks and appies. Then we went back to the room to sleep.

June 16 – I slept pretty well and only got up once in the night.

We got up early, organized our stuff and got showered to start the day. We had lunch with a friend at the hotel. I changed my bag and then we did a little exploring of Granville Island in the rain. We had a couple of drinks and then took the little ferry back downtown to our hotel. The walk was all up hill. Once back at the hotel we had

to register for our train ride the next day. We had to be ready before 6:00 AM. We went to a Greek place for supper. They serve trucker size meals. It was good but not like our favorite restaurant in Calgary. We went back to our room to be ready for an early start in the morning.

June 17 – We got up, showered and got ready. We got on to the bus to take the train and away we went. It took over an hour to get away from Vancouver. We passed farms, trees, forest, rivers, rocks and animals. We saw deer, osprey, picas and bald eagles. The train was stop and go as we had to yield to freight trains. We had a twocourse breakfast; fruit salad and a waffle or a yogurt parfait, then drinks, followed later by a two-course lunch; salad and salmon or chicken. The afternoon snack was chocolate covered nuts or granola, and more drinks. I was very full and had to use the WC. I put my jacket on the hook and sat down. The movement of the train and my jacket waving in front of the flush sensor kept setting it off.

We arrived in Kamloops and sought transfer to the hotel. We had appies and drinks at the brew pub next door. It was the best bruschetta; they used a balsamic vinegar reduction. It was so delicious. We, again needed to get up before 6:00 AM. June 18 - On the road again or should I say back on the 'tracks'?

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

The train was split with people going to Jasper, and the rest of us going to Banff. There were still about 700 passengers. More forest, rocks, rivers, snow-capped mountains and the spiral tunnels. We saw elk, bear, chipmunk, and big horn sheep. We had more to eat and drink. I skipped the salad and the afternoon snack. We took a bus to the hotel and had an Italian supper. We had not been given a time for pick-up to Calgary.

June 19 – We asked at the front desk about the bus pick up time. They said 10:15 but that pick up didn't happen and neither did the next one. We called the bus company, and were told that we were supposed to be picked up at 2 pm but they said they would try to get us on the 12:00 one. Instead of enjoying Banff, we sat outside all morning waiting; (if we had only known the correct pickup time). We were finally Calgary bound. Our daughter picked us up and we finally got home. I gained five pounds, no signs of Covid, and had a wonderful, eventful excursion. n Jerry is a member of Calgary Ostomy Society.

Ed. Note: The Rocky Mountaineer is a special train from the BC coast to either Banff or Jasper in Alberta.

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PASSION Project

by Lisa Peacey, NSWOC | Surrey Memorial Hospital

My nine-year-old daughter was asked to do a passion project pre-

sentation for her class, and she chose ‘ostomy awareness’ (perhaps having an NSWOC for a mother contributed to that decision *wink wink*). This was a two-part presentation. Just before the winter break she presented on the gastrointestinal system, then in April she presented a PowerPoint on ostomy. Along with a teaching apron, she demonstrated how loop and end ostomies are made, and had the class try pouching stomas which we made from moulding clay. Chris Stefani from Hollister was fantastic as usual, and sent over Hollister products for the kids to try pouching. All of the kids received a stoma pin after, because they are now ‘Ostomy Champions’. The presentation went great and her classmates had many questions!

Editor – Why did your daughter chose the topic of ostomy for her presentation?

Jaelyn says she chose ostomy because she thought it was very interesting when I explained to her what an ostomy was.

She felt that if she shared that information with her classmates they would find it interesting as well, and they would be able to help if someone they knew had an ostomy.

In the second part of the presentation Jaelyn defined ostomy, and discussed end versus loop construction. She described the two main types of fecal ostomies (ileostomy and colostomy) using a teacher apron to demonstrate how they are created. She discussed 52 OSTOMY CANADA WINTER 2022

the types of output typical of these types of ostomies and related that back to part one of the presentation, which reviewed the organs of the gastrointestinal tract and their functions.

Jaelyn told her class the importance of never making faces or saying hurtful comments to someone about their ostomy, and to remember that the ostomy had saved their life!

She says that it was so fun to teach her class how to size and pouch an ostomy! The kids really liked this hands-on activity and it ‘felt like an art project’.

Overall her classmates enjoyed the presentation, and many agreed that they thought ostomies were going to be ‘gross’ when she started the presentation, but now they think ostomies are ‘pretty cool’.

‘Pretty cool’ is about as good as it gets in a grade three-four split class.

Her teacher (Mme Claude Maher) wrote: “She is a natural for sure, and her love of sharing her knowledge with others is evident. I see a little university professor in the making! She pretty much used the whole hour between recess and lunch to teach us, and to guide and support students through the process of changing the stoma bag! What an adventure it must be for patients who need to do this every few days! It really opened our eyes into a reality that I am sure most of us had never even heard of. I appreciated how much effort was put into preparing kits for everyone to experience this, so again, thank you so much.” n

NSWOCC Indigenous Wound, Ostomy and Continence Health Core Program Launches the “Sharing Circle” Website

Nurses Specialized in Wound, Ostomy and Continence

Canada (NSWOCC) launched the Indigenous Wound, Ostomy and Continence Health Core Program in June 2018, to address the inequity of healthcare delivery in the areas of wound, ostomy and continence.

A project team made up of individuals who work on the frontline with Indigenous, Metis, and Inuit people was established and included two Indigenous patients.

Objectives were set to develop a national communication tool in the form of a website which would be an online centralized informational and educational resource hub. The aim of this website is to enhance accessibility of information and resources to improve healthcare for Indigenous peoples.

The objectives in developing this website were as follows: • Act as a single directory whereby hyperlinks to culturally safe Indigenous healthcare information and educational resources for patients, NSWOCs, and other healthcare professionals could be found.

•D isplay hyperlinks to Indigenous Wound, Ostomy and Continence health resources broken down by Province/ Territory to help patients, NSWOCs, Skin Wellness Associate Nurses (SWANs) and other healthcare professionals to disseminate pertinent information that exists elsewhere online for the respective region they live and work in.

• Share news related to Indigenous Wound, Ostomy and Continence health.

• Welcome visitor-submitted suggestions for new links to resources to be added to the website.

• Support website visitors getting in contact with an NSWOC closest to their area using the NSWOCC “Find an NSWOC” tool.

• Provide information in multiple mediums including video, blog, external hyperlinks, and images.

• Establish a common language by providing a glossary defining key ostomy-related terms adapted from the 2022 NSWOCC Ostomy Patient Teaching Guides for Ileostomy, Ileal Conduit, and Colostomy as well as establishing a glossary of terms, in the future, for wound care and continence.

It took seven months to refine the design, content, and navigation of the website. The Project Team collectively came up with the name of the “Sharing Circle” for this website because healthcare for Indigenous peoples must be shared by everyone. Sharing circles provide opportunities for each voice to be heard, respected, and valued.

They are a traditional practice in some Indigenous communities in North America and are designed to ensure everyone has an equal opportunity to share their opinions and ideas.

This new “Sharing Circle” website was launched on August 10, 2022 and was implemented through electronic communications,

a social media campaign, posting on the NSWOCC website and the websites of aligned organizations and through personal emails to colleagues.

The Sharing Circle can be accessed online at www.sharingcircle.online.

In developing and launching the “Sharing Circle” website, we have supported an open, respectful way of communicating wound, ostomy and continence information and resources for healthcare providers and First Nations people in a culturally safe manner. By having access to this website, we strive to support better access to patient care in a more timely manner. This is one step towards supporting improved ostomy care for Indigenous peoples. n Catherine Harley, eMBA, RN, IIWCC, Nurses Specialized in Wound, Ostomy and Continence Canada, Ottawa, Ontario, Canada.

Troy Curtis, BHum, Nurses Specialized in Wound, Ostomy and Continence Canada, Ottawa, Ontario, Canada.

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WINTER 2022 OSTOMY CANADA 53

History of Ostomy Canada Magazine

Ostomy Canada: Maria’s Legacy At the UOA Inc. Las Vegas National Convention in the summer

of 1995, Maria Siegl, who was then the Vice President of UOA Canada Inc., approached me to ask if I would be interested in taking on the job as the editor of UOA Canada Talks. This newsletter was only two years old. Prior to that, the ‘Canadian Ostomy News Letter’, published out of the office of the Hamilton Chapter, was the only Canadian publication. Canadian ostomates who were members of the United Ostomy Association Inc. received a magazine called Ostomy Quarterly, an excellent publication from the U.S. At this time, UOAC did not yet exist as a separate entity.

Maria told me that UOA Canada Talks would not be a great deal of work. “Just six or eight pages of Canadian news.” she said. But in reality Maria had much bigger plans for a UOAC publication. She wanted a ‘magazine’, a magazine that would be self-sustaining and one that would highlight the news and views of Canadian members.

In 1997, the International Ostomy Association held its 9th World

Congress in Calgary. It was at this event, on June 15, 1997, that UOAC (now Ostomy Canada Society) was born. The Canadian delegates voted to separate from the parent organization, UOA Inc. Maria was now President of the Canadian association. When the first UOA Canada Talks magazine, Volume 5, number 1 was printed, it had 16 pages in total with only four pages in full colour - the cover and three full page advertisements from the major manufacturers.

Because of the association with Hollister Limited, Maria had also been instrumental in obtaining funding for all previous publications of UOA Canada Talks. This association with Hollister Limited became a partnership, with Hollister underwriting all magazine expenses.

Not long after, Maria proposed to the Board of UOAC that the magazine be renamed Ostomy Canada. Maria’s vision was taking

The Progression of Ostomy Canada Magazine by Janet Paquet In 1996 I opened my mail to read my first

copy of the ‘Ostomy Quarterly’, a publication of the United Ostomy Association Inc. (UOA). It was a great magazine produced in the USA and featured stories of ostomates living their lives. Canadian members of the UOA also received a biannual copy of the ostomy newsletter, ‘UOA Canada Talks’.

In June of 1997 at the International Ostomy Association Congress in Calgary, Canadian delegates voted to separate from UOA Inc. The first Canadian ‘magazine’, 16 pages in total, was produced in black and white except for the cover and three full page ads from the three major ostomy manufacturers. That first issue was produced in the spring of 1997 and focused on the Canadian identity.

With that first magazine I had been struggling adjusting to my ‘new normal’, but I found comfort in reading and identifying myself within someone else’s journey. It was beneficial on so many levels.

Like our local chapter and peer support groups, Ostomy Canada magazine

54 OSTOMY CANADA WINTER 2022

by Roger Ivol

brings together people who have gone through similar experiences. In this case most of our readers have gone through cancer or chronic medical conditions and ultimately ended up with some sort of bowel or bladder diversion surgery resulting in an ostomy.

Doctors may not be able to offer enough emotional support needed to adjust to living with an ostomy but reading about others who share your experience can serve as a bridge between medical and emotional needs.

The magazine allowed me to feel less lonely and less isolated. I had literally thought that people would be able to tell I had an ostomy just by looking at me.

However, I realized after reading these stories, that people weren’t judging me. I gained a sense of empowerment and control. My stress level was reduced and I wasn’t anxious about going out to social functions. I learned that I didn’t have to check my pouch every few minutes to see

if I was leaking. Over the years, I discovered that the sky is the limit to what I can do even though I have an ostomy.

The medical articles and the Ask the NSWOC column helped me deal with skin issues, saving me from a hospital visit.

Now 26 years later the magazine has grown into a world class publication, which is being shared around the globe. No longer the 16-page newsletter, it has evolved into a full-colour 60 plus page masterpiece.

I look forward to receiving my issues of Ostomy Canada. There is power in personal stories. They add vibrancy to our lives and help us to feel connected to the world around us. More importantly, it can help us to understand the impact that ostomy surgery has and allows us to understand the power of Ostomy Canada’s mission. n Janet is Co-President of Hamilton & District Ostomy Association and former editor of Ostomy Canada *now assistant editor.

History of Ostomy Canada Magazine

STORIES •SUPPORT•INSPIRATION CAET Name Change Explained

a home computer. It had grown to 36 pages with nine advertisers. The Spring 2001 issue was the first one in full colour with 56 pages and 15 advertisers.

Of course, as the magazine evolved, more volunteers were needed. In the Spring of 2004, Janet Paquet, became Editor of Ostomy Canada and I became her assistant. Finding a magazine manager was crucial. Ultimately Richard Olley assumed the responsibility, and now Lorne Aronson is the advertising manager.

The volunteer graphic designers, although not professionals, did a professional-looking job. Currently, Tammy Hunter, a professional graphic designer, is the graphics editor.

In 2009 Lisa Gausman became assistant editor, and in 2012 she assumed the role of Senior Editor and continues to this day.

Maria’s vision did come true. Her legacy lives on with pride. n Daryl Beaudry - The Blind Side FOWC Needs Your Help

Winter 2018

New Name

Same Compassion ~ Empathy ~ Caring ~ Expertise

ISSN 1703-1818 CANADA POST #40038803

shape. What we didn’t know, except for a few close friends and family, was that Maria was terminally ill. She died November 6, 1997.

The printing company in Calgary did a fine job in paying tribute to Maria by putting her picture on the cover of the magazine holding our Canadian flag. It’s ironic that the first Ostomy Canada should have been the child that Maria never saw.

Ostomy Canada has grown since then. The printing is done in Ontario. Growth was slow in the beginning, with a volunteer offering to do the graphics design to save on printing costs. The Spring 1998 issue was the first one produced entirely ‘in house’ on

Roger is Past President of Hamilton & District Ostomy Association

WINTER 2022 OSTOMY CANADA 55

Ostomy Canada Youth Camp History Her name was Lucy. She and I spent a week together at ostomy

camp. Me as a full-time volunteer and Lucy as a first-time camper.

In the early 1980’s, an enterostomal therapist, Gail Hawke and other ETs identified a need for a place where young ostomates could gather, have fun, find support from other young people like themselves, learn self sufficiency and have psychosocial needs addressed.

The first camp was held in Squamish, B.C in 1985. The CAET (Canadian Association for Enterostomal Therapy) ran the camp program and the location was moved every two years. This meant reinventing the wheel, so to speak.

Lucy and I met in Montreal in 1990. I spoke very little French; she spoke very little English but we managed for the week.

Everyone had been telling me what an emotional experience camp was. By the end of the week, I confess that I still didn’t get

I AM A NURSE who Loves Ostomies I am a nurse who loves ostomies and people with an

ostomy, but I must admit that I did not always feel that way. Initially, I only studied ostomies because it was a requirement to become an NSWOC – Nurse Specialized in Wound, Ostomy and Continence (formerly known as an ET nurse).

Once I started to study ostomies, I was fascinated by them. By the time I completed my training in a hospital and saw the good that nurses can do to help people living with an ostomy, I became a walking billboard promoting ostomy education and a dedicated warrior in the fight against the associated stigma.

Three years ago, I was approached about a position working for Convatec Canada as a Clinical Specialist for Ontario. At first, I was reluctant to even speak with them, because I feared it would take me away from my rewarding work as a nurse. But then I began to learn about the Convatec me+™ support program for patients and I started to listen more intently. I was shown their website that contained not only a lot of product information but had amazing comeback stories of individuals who had embraced their ostomies to live their best lives to the fullest. And then, I was introduced to the communications hub for patients – the Customer Relations Center, staffed by nurses, who were not only product specialists but also operated the phones 10 hours a day to 56 OSTOMY CANADA WINTER 2022

by Pat Cimmeck

Everyone had been telling me what an emotional experience camp was.

By the end of the week, I confess that I still didn’t get what the fuss was about...

I finally got it. I suddenly understood why this camp is so special to the kids and the volunteers. She and I had had limited contact all week yet there was a strong connection and Lucy didn’t want the experience to end or for any of us to leave.

by Lori Zozzolotto, RN, NSWOC answers patients’ questions. I was struck by the fact that people calling in did not have to be their product users, that the nurses would still help them anyway. And finally, when I learned that Convatec supported their customers with product samples, to address the adjustment needs of new ostomates and those seeking support for current challenges and paid for one full-year’s subscription to the LifeWorks® Assistance Program, a counselling service on a variety of issues, I was thoroughly intrigued by the idea of working for such a compassionate company. However, I was still very skeptical. I did not believe that this company would do so many wonderful things for free. So, I decided to do a little detective work on my own and put them to the test. I called the Customer Relations Center and pretended to have an ostomy. I was pleasantly surprised by what I found. I could not believe how kind and knowledgeable the nurse was and focused our conversation on my well-being. That call clinched the deal and soon after I went to work for Convatec Canada. The last three years have been some of the best of my nursing career. It has been wonderful traveling around Ontario helping to break down the stigma attached to ostomies. n Note: This article was submitted by Convatec Canada as part of their Gold level sponsorship support of the 2022 Step Up for Ostomy Program.

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On the last night of camp, a final campfire was held. After it was over, everyone was saying their goodbyes and prepared to head home.

Lucy was in a wheelchair. As I was leaving the campfire, she came up behind me and wrapped her arms around my waist and cried “don’t leave! I don’t want you to go”. So many emotions hit me all at once.

I finally got it. I suddenly understood why this camp is so special to the kids and the volunteers. She and I had had limited contact all week yet there was a strong connection and Lucy didn’t want the experience to end or for any of us to leave.

At the end of camp in 1991, CAET decided they didn’t want to provide the camp any longer. Having witnessed first hand

how important this program was to the kids, the chair of the CAET youth committee, Heather Orsted and myself couldn’t let the camp disband.

We approached the Easter Seals Camp Horizon director in 1992 and were able to obtain a camp date in August of that year and the rest as they say, is history.

The Youth Camp was run as a separate entity until it came under the umbrella of UOAC (now Ostomy Canada Society) in 1996.

Ostomy Canada Youth Camp has been held at Easter Seals Camp Horizon located near Bragg Creek, Alberta in the foothills of the Rocky Mountains since that time. n Pat was the Ostomy Youth Camp Administrator for 28 years and is the President of Calgary Ostomy Society

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The Future

L'avenir

Tackling the Taboo

S'attaquer au tabou

As we have seen, these kinds of support are relatively recent.

The progress that has been made in the past 60 years is truly astounding.

Approximately 1 in 300 Canadians lives with an ostomy.

Despite the fact that ostomy surgery saves lives, the stigma of wearing an ostomy pouch persists. Ostomy surgery has often been referred to as the ‘secret surgery’. Until recently, there has been little public discussion, nor even private discussion relating to the topic. There continues to be much needless physical and mental suffering by ostomates and their families. There is still much to be done to eliminate the stigma associated with ostomy surgery.

In this anniversary year, let us openly celebrate the accomplishments of those who went before us, work together to take away the taboo and connect with those who need our support locally, nationally or internationally.

Comme nous l'avons vu, ces types de soutien sont relativement récents.

Les progrès qui ont été réalisés au cours des 60 dernières années sont vraiment stupéfiants.

Environ 1 canadien sur 300 vit avec une stomie, une ouverture créée chirurgicalement dans l'abdomen pour l'évacuation des déchets corporels. Malgré le fait que la chirurgie de stomie sauve des vies, la stigmatisation du port d'un sac de stomie persiste. La chirurgie de stomie a souvent été qualifiée de « chirurgie secrète ». Jusqu'à récemment, il y a eu peu de discussions publiques sur le sujet, ni même de discussions privées. Les personnes stomisées et leurs familles continuent de subir de nombreuses souffrances physiques et mentales inutiles. Il reste encore beaucoup à faire pour éliminer la stigmatisation associée à la chirurgie des stomies.

En cette année anniversaire, célébrons ouvertement les réalisations de toutes les personnes qui nous ont précédés et travaillons ensemble pour lever le tabou et connectez-vous avec ceux qui ont besoin de notre soutien au niveau local, national ou international.

Author’s Note: Ed Tummers had his large

intestine removed in 1989 and has enjoyed his ileostomy ever since. Before that he suffered for 10 years with ulcerative colitis. He is currently a member of Ostomy Halifax which will be celebrating its 50th anniversary in 2023. He is Past-President of Ostomy Halifax, a former Director of Ostomy Canada, and currently a member of the Governance Committee of Ostomy Canada.

Note de l'auteur. Ed Tummers s'est fait amputer le gros intestin

en 1989 et profite depuis de son intestin artificiel. Avant cela, il a souffert pendant 10 ans de colite ulcéreuse. Il est actuellement membre de Ostomy Halifax qui célébrera son 50e anniversaire en 2023.

Il est ancien président de Ostomy Halifax, ancien administrateur de Ostomy Canada et actuellement membre du comité de gouvernance de Ostomy Canada.

Note 1. In 1962, ostomy support groups from 24 communities joined together to form the United Ostomy Association (UOA).

Two of the groups were Canadian representing Montreal, Quebec and London, Ontario. UOA expanded rapidly and by the mid 1980s had about 50,000 members in almost 1000 communities in six countries (United States, Canada, Argentina, New Zealand, Sweden and England). The annual budget was almost $1 million. As you can imagine, governing such a complex organization became unwieldy and by 1997, each country had formed its own national organization. In Canada, it was rebranded as United Ostomy Association Canada (UOAC). In 2014, with changes to federal legislation, the name was changed to Ostomy Canada Society Inc. / Société Canadienne des Personnes Stomisées Inc. (OCS/ SCPS). Today OCS helps provide critical leadership in a wide range of programs and offerings (Disability Tax Credit, Visitor Program, Magazine and newsletter support, webinars, social media, connections to like-minded organizations, and a robust Board or Directors to name a few). n

Note 1. En 1962, des groupes de soutien aux personnes stomisées de 24 communautés se sont réunis pour former la United Ostomy Association (UOA). Deux des groupes étaient des Canadiens représentant Montréal, Québec et London, Ontario. L'UOA s'est développée rapidement et au milieu des années 1980, elle comptait environ 50 000 membres dans près de 1 000 communautés dans six pays (ÉtatsUnis, Canada, Argentine, Nouvelle-Zélande, Suède et Angleterre). Le budget annuel était de près d'un million de dollars. Comme vous pouvez l'imaginer, gouverner une organisation aussi complexe est devenu difficile à manier et en 1997, chaque pays avait formé sa propre organisation nationale. Au Canada, elle a été rebaptisée United Ostomy Association Canada (UOAC). En 2014, avec des changements à la législation fédérale, le nom a été changé pour Ostomy Canada Society Inc. Société Canadienne des Personnes Stomisées Inc. (OCS/ SCPS) et aide aujourd'hui à fournir un leadership essentiel dans un large éventail de programmes et d'offres (crédit d'impôt pour personnes handicapées, programme de visiteurs, soutien aux magazines et aux bulletins d'information, webinaires, médias sociaux, liens avec des organisations partageant les mêmes idées, un conseil d'administration ou des administrateurs solides pour n'en nommer que quelques-uns). n

> To find out more visit us at www.ostomycanada.ca.

> Pour en savoir plus, visitez-nous à www.ostomycanada.ca

58 OSTOMY CANADA WINTER 2022

Never miss the moment

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® LABORATORIES, INC.

LeeAnne, CeraPlus™ Product User

CeraPlus™ Ostomy Products — Protection Where it Matters Most Peristomal skin deserves advanced protection. CeraPlus™ Products provide a secure and comfortable fit to protect against leakage and help keep healthy skin healthy. Infused with ceramide, the body’s own defense against damage and dryness, CeraPlus™ Products protect skin from Day 1.

Prior to use be sure to read the Instructions For Use information regarding Intended Use, Contraindications, Warnings, Precautions and Instructions.

Hollister, the Hollister logo, and CeraPlus are trademarks of Hollister Incorporated.

All other trademarks and copyrights are the property of their respective owners.

Not all products are CE marked. ©2022 Hollister Incorporated.

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