Ostomy Canada Magazine - Summer 2023

It’s Okay to Not Be Okay Journey of a Volunteer Folliculitis Summer 2023

Bravery BAGS

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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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.

STORIES •SUPPORT • INSPIRATION Summer 2023 | Volume 31, Number 1

5 | Ostomy Canada Attends NSWOCC 42nd National Conference 10 | Welcome to our new Executive Director, Dana Ypma 17 | The Ten Year Engagement 18 | Folliculitis: Causes, Symptoms and Treatment 20 | Learning to Focus on Embracing the Positives 21 | O stomy Care & Supply – A Legacy of Care 22 | M essage from Our Ostomy Family to Yours...

27 | Edmonton Ostomy Support Group Rises from the Ashes 28 | O stomy Canada Youth Camp 2022 Thank You’s 29 | It’s What Some of Us Do When Confronted with Disease

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30 | Bravery Bags 32 | It’s Okay to Not Be Okay 35 | C elebrating 50 years of Ostomy Support in Atlantic Canada 37 | Ostomy Proud in Philadelphia - HealtheVoices Conference 39 | A Message from the President of FOWC 39 | Recipients of the WOC-EP Award 40 | My Journey with Ehlers-Danlos Syndrome 45 | Mediterranean Diet and the Gut 46 | My Journey with Crohn’s Disease

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49 | Journey of a Volunteer 50 | Finding My New Normal 53 | What Ulcerative Colitis Taught Me 54 | Traveling with an Ostomy 58 | Accommodations for Ostomates

DEPARMENTS 6 | Chair’s Message 8 | Executive Director’s Farewell Message 11 | NSWOCC President’s Message 13 | UOAA President’s message 14 | Ask a 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.

SUMMER 2023 OSTOMY CANADA 3

Sept

30 2023 On September 23, will you Step Up for those who need our support?

Spread the News • Highlight your impact Tell Ostomy Canada readers how you will be raising awareness and fundraising? Share your photos and stories with the rest of Canada.

Submissions will be featured in the Winter 2023 magazine.

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 Dana Ypma (Burton, BC) – non-voting BOARD OF DIRECTORS Chair – Ann Durkee-MacIsaac (Hebron, NS) Vice-Chair – Vacant Directors Jacqueline (Jackie) Bloom (Salisbury, NB) Deb Carpentier (Regina, SK) Troy Curtis (Ottawa, ON) Stephanie Grace (Newmarket, ON) Randy Hull (Winnipeg, MB) Jayne Kerr (Thornbury, ON) Réal Lamarche (Quebec City, QC) Andrew Joseph (AJ) Leveille (Langley, BC) Ian MacNeil (Ottawa, ON) Andrea Manson RN, BSN, NSWOC, NCA (Parksville, BC) Stephen Maybee (Mississauga, ON) Janet Paquet (Hamilton, ON) Joan Peddle RN BN NSWOC WOCC (C) CCHN (C) (Moncton, NB)

4 OSTOMY CANADA SUMMER 2023

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

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

OSTOMY CANADA MAGAZINE

Joan Peddle (Moncton, NB) – Atlantic Region

Lisa Gausman, BA, Senior Editor

PILLAR ADVISORS

Janet Paquet, Assistant Editor

Sustainability – Dana Upma and Stephen Maybee Advocacy & Government Relations – Ian MacNeil and Joan Peddle

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

Marketing and Communications – Stephanie Grace and Troy Curtis

Partner and Relationship Support – Andy Manson and Randy Hull

Julie Grzela, Assistant Editor Heather Twele, Assistant Editor Tammy Hunter, Graphic Designer Lorne Aronson, Advertising Manager Réal Lamarche, Translator (French content) OSTOMY CANADA CONNECTS Dana Ypma Tiffany Shorson SOCIAL MEDIA/WEBSITE Yaser Nadeem (Webmaster)

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 Dr. Tim Sproule Acting Chief Plastic Surgery, Scarborough Health Network - MD FRCSC

www.ostomycanada.ca­ Charitable Registration No. 119277093RR0001

Pictures from the Ostomy Canada booth

Ostomy Canada Attends NSWOCC 42nd National Conference in Ottawa

by Ann Durkee Chair of the Board of Directors As Chair of Ostomy Canada, I was indeed pleased to have been invited to attend the NSWOCC National Conference from May 3rd to the 7th in Ottawa. There were over 500 people in attendance and the execution of the plans prepared by the organizers was superb. The prominent event of the conference was the graduation of over 100 NSWOCCs and SWANs. My thoughts were that all of us living with an ostomy would have much more care in our country. We had a booth displaying all of Ostomy Canada’s support programs, Bravery Bags and Ostomy Canada Youth Camp. I also attended several workshops that were beneficial both for my own well-being and for Ostomy Canada’s. I brought greetings from Ostomy Canada at the formal banquet and also had the pleasure to present the Ostomy Canada Society’s Wound, Ostomy and Continence Educational Program Award to two of the graduates.

Attending with me were Ian MacNeil, OCS Director/ Ontario’s Regional Administrator, Joan Peddle, New Brunswick’s Regional Admin/NSWOC Nurse, Troy Curtis, OCS Director/ NSWOCC’s Operational Director and Stephanie Grace, OCS Director/Hollister.

I thank the NSWOCC planning committee and Cathy Harley, CEO for inviting me to take part in the workshops, the networking, the graduation, and everything else. The partnership between Ostomy Canada and NSWOCC is both rewarding and benefical n

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

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*Editor’s note – $600 was raised at this event and generously donated

by NSWOCC to help a child attend Ostomy Canada Youth Camp.

SUMMER 2023 OSTOMY CANADA 5

CHAIR’S MESSAGE

As I draft this article for Ostomy Canada magazine, Summer edition, there are nearly six inches of snow in my yard and the temperatures dip down below zero at night. At this moment when you start to read this message, I hope that you are enjoying much better weather and are keen to learn about the dynamics and the culture of the Board of Directors of Ostomy Canada.

Our Board of Directors gets off to a good start when everyone around the table agrees that their work drives the organization’s Vision, Mission, and Values. Their work in the boardroom can be quite powerful when our Directors come together. Each Director has the goal of serving the interests of each of its supporters and all people living with an ostomy.

The wording of our Vision is important because it creates a picture of the organization’s future: • To be Canada’s voice and agent of change for people living with an ostomy.

The Mission states the organization’s overall purpose; it is what you do, who you do it for, why you do it, and how it happens: •H elping people with an ostomy, and their circles of support, to live life to the fullest through advocacy, awareness, collaboration, and support.

The Values are what the organization believes, what it stands for and how it expects its representatives to act: •E xcellence in ostomy care, collaborative partnerships, professional accountability, transparent communications, and operational excellence.

Collectively, Directors of the Board believe in the Vision, Mission and Values to communicate to others what the organization should be.

The Board of Directors’ primary role is governance. It is to lead and guide the organization through the strategic plan with the future in mind. Ostomy Canada has 14 Directors, a Chair, a Secretary and a Treasurer and they meet quarterly to discuss matters of governance, succession planning, strategic planning, and finance.

The Board is responsible for By-laws and Policies. The Board has diversity among gender, race, and members with expertise in many areas. Our Board continually shares and commits to best practices for good governance and holds each other accountable.

In maintaining Board effectiveness and efficiency, we need to continually turn our efforts to succession. We ask that you stop in your tracks and say why not? Why not become part of Ostomy Canada by sending in an application to become a Director of the Board / Committee Member (applications can be found on our website). You might want to join us in our Vision, Mission, and 6 OSTOMY CANADA SUMMER 2023

Values to plan for the future.

We look forward to the next months and encourage your Chapters and Peer Support Groups to get together via way of educational days, conferences, special socials, meetings or just a coffee. In-person gatherings have been missed and I am sure you are all eager to meet, share your lives and most importantly share your ostomy world with each other with a big hug.

Ostomy Canada has set our goals high this year and we have succeeded in raising the goals in all areas of our Strategic Plan.

Fundraising has scaled to a higher level, advocacy, partnerships, support, and engagement have improved. Marketing and communications have improved, and all committees have enhanced their focus in many areas. Two years ago when we hired John Hartman for the position of Executive Director he brought a sense of ‘can do’ and ‘will do’ to the table. There is no doubt in my mind that he followed his plan with a level of experience and skills needed to make changes. As you are aware, John finished his two-year term in March and has decided to spend more time with his wife Sarah and make time for golfing and baseball this summer; three of his passions. We miss John and we thank him for his expertise, leadership, and commitment to Ostomy Canada Society. All the best to John, his family, and again a big “THANK YOU.” Challenges make one stronger and the departure of John Hartman has been a challenge; however, we have overcome the obstacles and found a new Executive Director. DANA M. YPMA, from British Columbia was chosen from a lengthy list of thirty-two excellent candidates for the position. We welcome Dana to Ostomy Canada and look forward to working with her in the future. By the time you receive this message many of you will have met or spoken to Dana. To better serve you, contact our national office at info@ostomycanda.ca, ann.durkee@ostomycanda.ca and/or dana.ypma@ostomycanada.ca I encourage each of you to volunteer, be a supporter, donate, and express your ideas and concerns to us. To the many volunteers who have come before us I say, “Thank you” – To the many who go forward with us I say “Welcome.”

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

Au moment de rédiger les premières lignes de cet article pour le magazine Ostomy Canada, près de 15 centimètres de neige recouvrent ma cour et les températures descendent sous zéro la nuit. Lorsque vous lirez ce message, j’espère que le temps sera plus clément et que vous serez enthousiastes à l’idée

d’en apprendre davantage sur la culture et la dynamique du conseil d’administration de la Société canadienne des personnes stomisées.

Les choses commencent bien pour notre conseil, quand tous ses membres conviennent que leur travail appuie la vision, la mission et les valeurs de l’organisme. Lorsque les membres de la direction unissent leurs forces, ils peuvent réaliser de grandes choses. Chacun d’entre eux a pour objectif de servir les intérêts de l’ensemble des sympathisants et des personnes stomisées.

Les mots décrivant notre vision sont importants, car ils laissent présager l’avenir de l’organisme.

•A gir comme instigateur de changement et porteétendard pour les personnes stomisées au Canada.

Cette mission, c’est la principale raison d’être de l’organisme. Elle décrit ce qu’on fait, pour qui on le fait, pourquoi on le fait et comment on le fait.

•A ider les personnes aux prises avec une stomie et leurs proches à profiter pleinement de la vie grâce à des services de soutien, de sensibilisation, de collaboration et de défense d’intérêts.

Les valeurs représentent les croyances de l’organisme. Ce qu’il incarne et ce qu’il attend de ses représentants.

•D es soins de stomie de grande qualité, des partenariats collaboratifs, une responsabilisation professionnelle, des communications transparentes et une excellence opérationnelle.

Collectivement, les membres du conseil croient en la vision, en la mission et aux valeurs de l’organisme, et orientent les autres sur ce que celui-ci devrait être.

Le rôle principal du conseil d’administration est la gouvernance.

Il s’agit de diriger et de guider l’organisme au moyen d’un plan stratégique tourné vers l’avenir. La Société canadienne des personnes stomisées compte 14 membres de la direction, une présidente et un secrétaire et trésorier qui se rencontrent tous les trimestres pour aborder des questions relatives à la gouvernance, à la planification de la relève, à la planification stratégique et aux finances.

Le conseil est responsable d’élaborer les règlements administratifs et les politiques, et ses membres sont diversifiés sur le plan du genre, de l’ethnie et de l’expertise. Il présente continuellement les pratiques exemplaires pour la bonne gouvernance et s’y conforme, et chaque membre prend ses responsabilités.

Afin de préserver l’efficacité du conseil, nous devons travailler sans relâche à planifier la relève. Arrêtez-vous un instant et demandez-vous : « Pourquoi pas? ». Pourquoi ne pas vous joindre à la Société canadienne des personnes stomisées et poser votre candidature au poste de directeur du conseil ou de membre du comité ? (les

formulaires de demande d’emploi se trouvent sur notre site Web).

Vous souhaitez peut-être embrasser notre vision, notre mission et nos valeurs afin de préparer l’avenir.

Nous attendons les mois à suivre et encourageons les membres de vos associations locales et de vos groupes de soutien à se rassembler à l’occasion de journées éducatives, de conférences, de rencontres sociales spéciales et de réunions — ou simplement autour d’un café. Les rencontres en personne nous ont manqué et je suis certaine que vous avez hâte de vous revoir, de parler de votre vie et surtout, de partager vos expériences en matière de stomie avec bienveillance.

La Société canadienne des personnes stomisées avait fixé de grands objectifs pour nous cette année, et nous avons réussi à relever le défi dans tous les aspects de notre plan stratégique. La campagne de financement est passée à un autre niveau et des améliorations ont été constatées sur la plan de la défense des droits, des partenariats, du soutien, de l’implication, du marketing et des communications.

Tous les comités ont su intensifier leurs efforts dans de nombreuses sphères. Lorsque nous avons embauché John Hartman comme directeur général il y a deux ans, nous avons tout de suite vu qu’il était du genre à passer de la parole aux actes. Je suis convaincue du fait qu’il a suivi son plan en tirant parti de son expérience et de ses compétences solides – tout à fait nécessaires à l’instauration de changements. Comme vous le savez, le mandat de deux ans de John a pris fin en mars et il a décidé de passer plus de temps avec sa femme Sarah, et de jouer au golf et au baseball cet été (trois de ses passions). John nous manque déjà, et nous tenons à le remercier pour son expertise, son leadership et son engagement envers la Société canadienne des personnes stomisées. Nous lui souhaitons le meilleur auprès de sa famille. Encore une fois, MERCI! Le départ de John a certes apporté son lot de défis, mais ceuxci nous rendent plus forts; nous avons surmonté les obstacles et trouvé celle qui est devenue la nouvelle directrice générale.

Dana M. Ypma, de la Colombie-Britannique, a été choisie parmi trente-deux excellents candidats à ce poste. Nous souhaitons à Dana la bienvenue au sein de la Société canadienne des personnes stomisées et avons hâte de travailler avec elle. Au moment où vous lirez ce message, bon nombre d’entre vous l’auront déjà rencontrée et auront eu l’occasion de lui parler. Pour tout besoin, communiquez avec notre bureau national à info@ostomycanda.ca, ann.durkee@ostomycanda.ca ou dana.ypma@ostomycanada.ca.

Je vous invite tous à faire du bénévolat, à apporter votre soutien, à faire des dons et à nous transmettre vos idées et préoccupations.

Je tiens à remercier les nombreux bénévoles qui nous ont précédés.

Et à souhaiter la bienvenue à tous ceux qui se joindront à nous pour aller de l’avant.

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

SUMMER 2023 OSTOMY CANADA 7

EXECUTIVE DIRECTOR’S FAREWELL MESSAGE MÉSSAGE DU DIRECTEUR EXÉCUTIF A Few Final Thoughts From John Hartman...Thank You….

As I shift to a new phase on this journey of life (retire, family, golf, friends, travel, garden, golf, curiosity, golf) please know that I have learned a great deal from many of you and appreciated the last two years in working alongside Chapters, Groups, Board members, staff, partners, and volunteers from across the country. I am confident that we, together, have made wonderful gains. I also know that there is much more to accomplish - together.

I believe we need to strengthen our connections amongst each other as Chapters/Support Groups and individuals. In my opinion there are many best practices happening that people need to share, collaborate, and build upon. There is still too much ‘distance’ amongst us and too many reflections on ‘yesterday and the past’.

Together, we need to move forward. Change will happen and yet it is stronger when we shift from being on the sidelines to getting into the action. I wonder if we are asking ourselves, can I volunteer for local or national activities? If I believe in building a stronger network, am I open to investing time, talent, and treasure within my means? Do I have feedback and ideas that may influence direction and decision? How can I help someone live life to the fullest?

Over thirty-three years ago a person who I did not know ‘thanked me’ as she pointed to a United Way lapel pin that was on my jacket. At the time, I was on ‘loan’ from a large Canadian insurance company to help raise funds during the Fall campaign. She shared that three member agencies had helped her when she came to Canada. She recognized the logo and appreciated the impact it had had on her life. At that very moment, I knew that I was going to make a transformational career shift and help people who I would never meet and yet I could help them in a philanthropic way. What a cool job and one that I have enjoyed almost every day. So as I say good-bye, farewell and ‘fore’, I also say ‘Thank You’. I wish you all the best with the future of this organization inspired by each of your personal growth and dreams of providing support and inspiring success for others to follow.

Many have said, “I cannot do anything about the yesterday and yet I can forge a new future tomorrow”. As my greatest coach and mentor shared with me many times...“John, Just Do It”.

That mentor was my father....

John Hartman, Past Executive Director

john.hartman@ostomycanada.ca

8 OSTOMY CANADA SUMMER 2023

Réflexions de fin de parcours et remerciements de John Hartman Alors que j’entre dans une nouvelle étape de ma vie (retraite, famille, golf, amis, voyage, jardinage, golf, découverte et... golf!), sachez que j’ai beaucoup appris de bon nombre d’entre vous et que j’ai véritablement aimé travailler auprès des associations locales, des groupes, des membres du conseil, du personnel, des partenaires et des bénévoles de partout au pays au cours des deux dernières années. J’ai la conviction qu’ensemble, nous avons accompli de grandes choses. Je sais aussi qu’il reste encore beaucoup de chemin à parcourir, en équipe.

Je crois que nous devons solidifier nos relations, tant au sein des associations locales et des groupes de soutien que sur le plan personnel. À mon avis, il existe de nombreuses pratiques exemplaires que les gens doivent faire connaître et mettre en œuvre pour bâtir l’avenir. Il y a encore trop de distance entre nous et les réflexions sont souvent tournées vers le passé. Ensemble, nous devons avancer. Le changement se produira certainement et aura une plus grande portée lorsque nous quitterons la ligne de touche pour entrer dans le feu de l’action.

Je me demande si tout un chacun réfléchit à la possibilité de faire du bénévolat durant des activités à l’échelle locale ou nationale. Nous croyons important de bâtir un réseau plus solide, mais sommes-nous prêts à investir notre temps, notre talent et notre argent (selon nos moyens) pour y parvenir? Nos idées et nos commentaires pourraientils influencer l’orientation de l’organisme et ses décisions? Comment pouvons-nous aider une personne à profiter pleinement de sa vie?

Il y a plus de trente-trois ans, une personne que je ne connaissais pas m’a remercié en voyant l’épinglette de Centraide que je portais alors sur mon manteau. À l’époque, je participais à la collecte de fonds automnale d’une grande compagnie d’assurance canadienne. Cette personne m’a dit que trois organismes participants lui étaient venus en aide à son arrivée au Canada. Elle a reconnu le logo de Centraide et m’a fait part de son importance dans sa vie. À ce moment précis, j’ai su que j’allais prendre un tout autre tournant professionnel pour aider des gens que je ne rencontrerais peut-être jamais, mais que j’allais soutenir grâce à la philanthropie. Quelle belle profession, que j’ai aimée presque tous les jours! Alors que je vous dis au revoir, je tiens aussi à vous dire merci. Je vous souhaite le meilleur pour la suite des choses dans cet organisme, orienté par votre croissance personnelle et votre rêve d’aider les autres et de les inspirer à faire de même.

Beaucoup ont dit : « Je ne peux pas changer le passé, mais je peux façonner l’avenir ». Eh bien, je vous dirais ce que m’a souvent répété mon coach et mentor : « Foncez ».

Ce mentor, c’était mon père.

John Hartman, Directeur exécutif passé

john.hartman@ostomycanada.ca

Content Needed!

Take part in raising ostomy awareness – Write a story. Read a story.

Sharing is part of being a strong advocate and makes our community stronger.

All submissions are welcome.

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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SUMMER 2023 OSTOMY CANADA 9

Welcome

to Our New Executive Director, Dana!

Souhaitons la Bienvenus

à Dana, Notre Nouvelle Directrice Générale!

Congratulations and a warm welcome to Dana Ypma who started with us as our new Executive Director, April 2023. We know we will accomplish great things together with her expertise and dedication.

Dana took over from our former Executive Director, John Hartman, who retired in March. John’s stewardship of our organization was characterized by his hard work, innovative ideas and tireless efforts to bring our organization forward. Dana has taken over the reins to continue this momentum.

Dana comes to us as a nonprofit leader with over 25 years’ experience in the social service sector, bringing a strong history of not-for-profit, social service and community advocacy experience.

In this role with Ostomy Canada, Dana will continue to champion the important work on behalf of those living with an ostomy to live life to the fullest.

Her educational background includes a MA in Social and Applied Sciences from Royal Roads University in Victoria, BC, and a B.A. in Social Sciences from the University of Calgary.

When she is not working, you will find her enjoying nature, walking her dogs (Lucy and Myla), kayaking, and beach-combing for driftwood in the West Kootenays of BC. We look forward to the future growth and success of Ostomy Canada as she navigates us toward further success! Welcome, Dana!

Accueillons chaleureusement Dana Ypma, qui s’est jointe à l’équipe en tant que directrice générale en avril 2023. Nous savons que grâce à son expérience et à son dévouement, nous accomplirons ensemble de grandes choses.

Dana remplace notre ancien directeur général, John Hartman, qui a pris sa retraite en mars. Durant son parcours à la Société canadienne des personnes stomisées, John s’est démarqué par son travail acharné, ses idées novatrices et ses innombrables efforts pour pousser l’organisme de l’avant. Dana prend la relève et poursuivra sur cette lancée.

Forte d’une expérience de plus de 25 années dans le secteur des services sociaux, cette véritable leader d’OSBL mettra à profit ses connaissances en matière de défense des intérêts de la communauté. Dans le cadre de ses fonctions à la Société canadienne des personnes stomisées, Dana continuera à chapeauter l’important travail accompli au nom des personnes vivant avec une stomie, afin de les aider à profiter pleinement de la vie.

Elle détient entre autres une maîtrise en sciences sociales et appliquées de l’Université Royal Roads de Victoria, en ColombieBritannique, ainsi qu’un baccalauréat en sciences sociales de l’Université de Calgary.

Dans ses temps libres, elle profite de la nature, promène ses chiens Lucy et Myla, fait du kayak et parcourt les plages de West Kootenay à la recherche de bois de grève.

Nous avons hâte de prendre part à la croissance et au succès de la Société canadienne des personnes stomisées à ses côtés.

Bienvenue, Dana!

Dear Ostomy Canada Society Community, My name is Dana Ypma and I am writing to formally introduce myself as the new Ostomy Canada Society Executive Director. As your new Executive Director, I am delighted by the opportunity to build on the wonderful work of my predecessor, and to interact and collaborate with the amazing Ostomy Canada community to further our mission. I look forward to learning from you and working together in support of a quality resource for all people living with an ostomy to live life to the fullest.

Best regards,

Dana

10 OSTOMY CANADA SUMMER 2023

NSWOCC PRESIDENT’S MESSAGE 2022 was both illuminating and challenging. We all learned a lot about health care, inflation, and fiscal management; a lot of which was not good. What it boiled down to was that there are not enough health-care professionals to provide the health care that Canadians need (including NSWOC’s) and that people are having problems affording the necessities of life (including ostomy supplies and medication). At the NSWOCC, we continue to work to improve quality of life for people with ostomies.

The Nova Scotia Wound, Ostomy, and Continence Summit: Supporting Sustainability was held on September 22, 2022 in Halifax. This event brought together government officials, administration, clinical leaders, and industry partners to share information and begin conversations on improving and increasing WOC access and care provision in Nova Scotia. There were 70 people registered and the feedback on the information provided was positive. A presentation on the patient’s perspective came from Ostomy Canada Society’s Chair, Ann Durkee. Plans and ideas are being discussed to repeat similar sessions in other provinces. It is time for a wave of advocacy to flow across this country in order to share a strong message to provide better support to people living with an ostomy.

From May 3 to 6, 2023, the NSWOCC held an in person annual general meeting and education conference in Ottawa. “Let’s Face

It – Together” is an excellent education program that has been developed by the national conference planning committee to enhance the knowledge and skills of Canadian nurses specialized in wound, ostomy, and continence and aligned healthcare professionals. This translates to improved care for patients. We are excited to have been able to hold a face to face event for the first time in several years.

Best Practice Recommendations for the Prevention and Management of Parastomal Hernias underwent peer review and was presented at the May conference. There are so many people who can and will benefit from this information based on a challenging ostomy complication.

In December 2022, Bev Smith of the NSWOC Indigenous Core Program was featured in the CNA’s podcast series Nurses’ Voices.

Bev spoke to the CNA about the Sharing Circle website and how it was developed with the aim of improving accessibility and healthcare for Indigenous Canadians and dedicated to helping patients and healthcare professionals access a directory of resources related to Indigenous health, including ostomy care. This podcast can be viewed at: https://www.nswoc.ca/podcasts Wishing you all the best.

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

SUMMER 2023 OSTOMY CANADA 11

April Parsons Photography

Inc.

12 OSTOMY CANADA SUMMER 2023

UOAA PRESIDENT’S MESSAGE

Greetings Friends; I am pleased to have the opportunity to address you as the new President of UOAA. I’m a colorectal cancer survivor and have had a permanent colostomy since 2008 and have volunteered with UOAA since 2015.

I am a registered nurse who has worked in neonatal intensive care most of my career. I currently live in Washington State but I’m proud to be from New Orleans, Louisiana.

To keep us moving ahead, UOAA is developing a new strategic plan on what the ostomy community wants and expects from their national organization and how we best serve and advocate for the ostomy community.

Our Education Committee is working on how best to fill in gaps in ostomy education among home health-care professionals and other critical caregivers. I am thoroughly impressed by their passion and the stellar work on display in the new colostomy, ileostomy and urostomy guidebooks that are now available for free on our website: https://www.ostomy.org/ I love the fact that on our website and in social media there are no borders and we’re all just ostomates helping other ostomates

wherever we are. Please help yourself and explore our website ostomy.org and share any resources that may benefit those in need.

May you all have a happy and healthy year ahead.

Sincerely, Cheryl Ory, UOAA President

SUMMER 2023 OSTOMY CANADA 13

ASK A NSWOC

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

Q

I am 25 years old and am very active playing team sports. I had to have surgery and ended up with an ileostomy six months ago. The surgeon says I am ok to go back to working out and playing sports but I am fearful about harming my stoma. What can I do?

A

Working out and being active enhances quality of life and the research shows that you have much better odds of living a longer and healthier life. There are products available to help protect the stoma. Contact the manufacturer through the 1-800 number and request a plastic plate that is held in place with an adjustable belt or ask your local NSWOC nurse where one can be obtained.

Q

It is hard to find a health care clinician to ask them simple questions when needed. I have had a colostomy for 24 years and am coping well on my own. Every so often I have had a question about my stoma, a colostomy, that my physician could not answer. It is so hard to find the right person who will have an answer for me! Is there a service or a person I can contact to ask questions when I don’t necessarily have an issue with my stoma?

A

Healthcare in Canada is becoming so difficult with shortages of programs and nurses for the last several years. Ostomy Canada has a Medical Lifestyle Advisory Team made up of volunteers with different healthcare backgrounds who can be accessed.

The Medical Lifestyle Advisory Committee is comprised of a group of dedicated, professional and knowledgeable experts in the field of ostomy care and management. Opinions, recommendations and advice expressed provide a safe and professional place for interchange of ideas and discussions. The intent is to support people living with an ostomy so that they may live and thrive in a more balanced life.

Recommendations are not made to diagnose, or provide treatment for any health ailment, medical condition or disease, nor, to be a substitute for seeking professional advice, guidance and treatment for such problems. No responsibility or liability will be made in connection with any advice. All matters remain confidential and will not be shared.

Any one can read the questions and answers once they are posted.

Names of the person who submitted the question will not be listed.

Here is the site. https://www.ostomycanada.ca/medical-lifestyleadvisory-committee-questions/

14 OSTOMY CANADA SUMMER 2023

Q

My flange used to stay on for four days with no leakage but over the last three months I am having to change the flange daily due to leakage. I have changed products but nothing is working! My skin is beginning to break down and is very sore. I have gained 40 pounds over the last several years so it is difficult to see what I am doing when changing my flange.

A

These issues really affect your day to day life and add stress!

There are several things that can be suggested to reduce the leakage. Have a family member help or assist you until the skin has healed or if the skin is not improving consider homecare nurse services.

Have a shower with the flange off, then pat the area dry. Use a no-sting skin prep wipe (different manufacturers’ products are on the market) around the stoma, especially over the macerated raw tissue. Allow the prep to dry. Apply paste or a wafer barrier around the base of the stoma. Press the flange down with your fingers (warmth will increase adhesion) for 30 seconds, moving the tips of your fingers around the inner area of flange. Use a belt to hold the flange firmly against the skin. Be certain to empty your pouch regularly before half the pouch fills with contents.

Reasons as to why the flange may not be adhering are: weight gain can cause a change in contour; the shape or development of a skin fold under or around the stoma site which affects adhesion; bulging around the stoma may mean a hernia has developed which also changes contour; the inability to see due to weight gain – position a mirror on a chair to better see when applying the flange may help; sometimes a change in clothing styles may be pulling at the flange/pouch.

If you are unable to resolve the issues and leakage continues, a NSWOC assessment may help to identify the issue and find a resolution.

Q

My mother has had a colostomy for the last five years.

We’ve had this ongoing argument with her trying to get her to use baby wipes when she cleans her stoma. She refuses!

Any suggestions?

A

Your mother is right! Baby wipes have moisturizers and oils in them to moisturize the skin on baby’s behinds. These products do a great job in cleaning the area but prevent the adhesive flanges from sticking to the skin around the stoma thereby causing leakages. Some wipes have fragrances that can be irritating to the skin and can cause skin breakdown. It is usually suggested that the person with a stoma have their own reusable facecloths to use for cleaning their stoma. It is suggested to purchase them all in a specific colour to identify them for use by only the person with a stoma. n

The Ten Year Engagement Wow, it has been 10 years since my engagement to my partner.

I am not sure if IT is male or female. It does NOT matter, but I needed a name. I chose Oscar the Pouch.

We were introduced in a doctor’s office and then became engaged in a hospital in a ‘colostomy’ ceremony. Three months later that relationship fell apart. I then immediately become re-engaged in an ‘ileostomy’ ceremony. It was not too romantic, but was a necessary liaison.

I renamed my new partner O2P2 but I still use Oscar.

After I recovered from the shock of the second engagement I met my new ‘in laws’ at an ostomy family meeting. Everyone was VERY friendly. NO congratulations, but a lot of stories about their ‘hook-ups’ and a lot of hints and information about managing the hard times. I felt so much better knowing I have ‘relatives’.

A couple of years later I moved out of town. I visit this family when I can and I keep in touch through their newsletter. At times I still seek advice.

I know, from the Ostomy Canada magazine, that I have a lot of ‘cousins’ across the

by Gerry Lalonde

country and all over the world. I might meet some of them. but will not recognize them, because the ‘family’ resemblance is NOT always visible.

Today Oscar and I remain attached ‘near the hip’. It is a strange relationship, full of daily weight gain and loss, close encounters in the washroom and occasional disasters. We reconcile and it all seems to come out in the wash.

We do EVERYTHING together; eat, sleep, travel, play and work. We keep our association ‘clothed’ and not open to public eyes, curiosity or criticism. I do not brag about this ‘partnership’ nor am I ashamed by it. It is what it is.

I wrote this article NOT to profess my love for my partner, but for two reasons. First, this 10-year engagement is a big part of what keeps me alive and kicking. Second, I proudly admit that I have been openly unfaithful to Oscar. I have another partner, who I love and am proud of. She has been with me a lot longer. She is the most important reason I continue to be happy and healthy. n Gerry is a member of Oshawa & District Ostomy Association

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SUMMER 2023 OSTOMY CANADA 17

Folliculitis: Causes, Symptoms and Treatment Folliculitis is a common skin condition that develops when bacteria or a blockage enter a hair follicle, a small pocket in the skin.

Hair follicles are found everywhere on the body except the lips, the palms of the hands, and the soles of the feet. Potentially, folliculitis can happen anywhere hair grows but it is frequently found on the neck, thighs, buttocks or armpits. It’s frequently brought on by a bacterial infection. At first, the tiny pockets where each hair grows may appear to be little pimples (hair follicles).

Folliculitis is frequently brought on by bacterial infections of the hair follicles, most frequently Staphylococcus aureus (staph).

Viruses, fungi, parasites, medicines, and physical trauma can all contribute to it. At times the cause cannot be identified.

Risk factors for developing folliculitis include: • Clothes that promote heat and perspiration under them (e.g., straps, gloves, helmets, boots) • Public pools, and hot tubs with inadequate chlorine and pH levels • Waxing, shaving, clothes that are too tight, wigs, and oils • Certain medications – ask your family physician to review your meds • History of excessive sweating • Chronic disease affecting the immune system The follicles initially turn red with some inflammation. They may be sore and can be irritating. Most of the time folliculitis can be treated on its own. Good skin care including regular cleansing with soap or skin cleanser, patting skin dry and applying moisturizer will help to heal and eliminate the inflamed follicles, most of the time.

Folliculitis can be divided into two groups. Deep folliculitis affects the entire follicle as opposed to superficial folliculitis, which only affects a section of it. The most prevalent forms of folliculitis are listed first and include: •B acterial folliculitis is common as the hair follicles become infected. It presents typically as pus-filled pimple(s) that are raised, sore and itchy. Somehow bacteria infiltrate the hair follicle which then become infected.

•H ot tub folliculitis is caused by bacteria present in hot water where the chlorine and pH levels aren’t right. It may take up to one to two days after hot tub exposure for the red, round, itchy rash to develop.

•R azor bumps may look similar to folliculitis but really are ingrown hairs. This is more common with people with curly hair. Bikini waxing can also cause a razor bumps rash.

•P ityrosporum folliculitis is a yeast infection most commonly found on the back and chest. Symptoms are an itchy rash with pus-filled raised bumps.

•G ram-negative folliculitis is a type of infection mostly found around the nose and mouth. It appears as pus-like raised bumps.

•E osinophilic folliculitis is reoccurring patches of intense itch18 OSTOMY CANADA SUMMER 2023

by Karen Bruton RN BScN MCISc-WH WOCC(C)

ing. It presents as pimples and bumps near hair follicles in the area around the face and upper body.

•B oils and carbuncles are deep folliculitis causing sudden boils to appear which are extremely painful. The cluster of boils is called a carbuncle.

• Sycosis barbae occurs for those who shave.

PREVENTION

The following recommendations can reduce or eliminate reoccurring folliculitis: • Regular skin care. Use your own, clean facecloth / towel and don’t share with others • Launder facecloths and towels regularly • Pat skin dry. Reduce friction caused by tight clothes, helmets, and backpacks • Dry garments prior to using (e.g., gloves, boots) • Grow a beard if frequent folliculitis occurs • Use a proper shaving technique. Wash with mild skin cleanser; cleanse using a circular motion; apply the appropriate amount of shaving lotion; shave downward with the grain; shave with a clean, sharp razor with rinsing frequently with warm water; apply moisturizer after shaving.

• Discuss other options with a health care provider

EXAMPLES OF FOLLICULITIS

TREATMENT

Mild folliculitis can likely be treated with straightforward self-care practices in a few days without leaving any visible scars. For more severe illnesses or infections that recur, prescription medicine could be necessary. Untreated severe infections can leave scars and cause permanent hair loss.

If there is no improvement seen after several weeks of using proper skin care techniques consult a family physician or nurse practitioner. If you notice a sudden increase in symptoms (redness, pain, fever, chills and/or general malaise) seek immediate care.

Mild infections of folliculitis that do not heal on their own may need a course of lotions, gels, creams or shampoos. Medications to reduce the inflammation might be prescribed by the physician or nurse practitioner. Antibiotics are not usually ordered at this stage.

Again, good skin care and practices will be the cure!

Severe infections of folliculitis may require a course of oral antibiotics.

Surgical procedure. A large boil or carbuncle may need to be drained by the physician or nurse practitioner. n

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Ostomy Care Making a difference in the journey of life

Learning to Focus on Embracing

the Positives

by Angela deBeaudrap

A traditional gift for one who celebrates a tenyear anniversary will be something made of tin because it signifies preservation and longevity. As I get ready to celebrate my 10th stomaversary, tin would be fitting because my bag has allowed me to preserve my life and has given me longevity.

In September 2012, I finally underwent a colonoscopy that was more than a year and a half late due to multiple misdiagnoses by multiple physicians.

The resulting diagnosis was colorectal cancer and I remember feeling the ground open up beneath me.

I had been through cancer before, but this felt bigger. Finally, I knew what was causing me to have the pain and bleeding, but the next phase of discovery could not mentally prepare me for what my future was going to look like.

Congratulations! In order to save your life, you are getting a permanent colostomy bag! There was no way it could be real. I was 35 years old and given my knowledge of colostomy bags at the time, I thought they were reserved for old people, not the young. Trust me, I learned quickly how wrong I was.

On November 19, 2012 I went in for an abdominoperineal resection which created my permanent colostomy. I was the proud owner of a ‘Barbie-butt’ and an assortment of colostomy bags in a beautiful shade of beige/brown. I was also the recipient of permanent little tattoos to mark where radiation was to be performed followed by nine plus months of chemotherapy. My life as I knew it was over and although I put on the face of ‘Warrior Girl Ange’, I was empty inside. I was sick of treatment and honestly I wanted to die. The reality was, when I truly looked at my life then, I wasn’t empty because of treatment, I was empty and wishing I could die because I felt hideous. I looked in the mirror and I only saw the bag. My days of form-fitting clothes were over, my typical diet would have to change and I would have to tell people about my bag because it was noisy.

20 OSTOMY CANADA SUMMER 2023

Angela with husband Harley and son Xander

Eventually I healed from treatment and I had to start living life again. I struggled to develop a routine. I struggled buying clothes that would hide my pouch, but gradually the trend in fashion made its way back to baggy, over-sized clothing which was ideal for me. It has been almost ten full years and I still hide as much as I can. I avoid anything slim-fitted or form-fitted as the thought of my pouch carrying a bowel movement is an embarrassment to me. This is my struggle and I fight with it daily.

I will see pictures online of people with pouches like I have wearing bathing suits, tight dresses and other types of clothing that accentuate their bodies and inside I wonder if my shirts are hiding things as well as they could be or if I should go bigger.

Over ten years, I went from loathing my stoma to accepting it.

I cannot change the fact that I have this permanent body accessory but I can embrace the fact that it saved my life. This pouch has allowed me to watch my son grow from a toddler into a teen. It has also allowed me to be around to fall more in love with my husband who has been my rock through all of this. I know I have my reservations about my personal appearance, but I take my renewed chance at life seriously and have been learning to focus on embracing positives.

My stoma, as much as I used to think it did, does not define who I am. I define who I am and my stoma is just along for the ride. n Angela lives in Victoria, BC

Ostomy Care & Supply – A Legacy of Care The Ostomy Care & Supply Centre in New Westminster, BC, innovated a model of care that is their signature. For almost 40 years, the team of NSWOCs (Nurses Specialized in Wound, Ostomy & Continence) has grown and changed, but what has remained the same is the focus on providing support for as long as someone has an ostomy.

As anyone who has experienced ostomy surgery knows, the learning curve for achieving a new normal can be steep. Although having access to many products and options is beneficial, navigating through them and fine tuning the process can be difficult without guidance. Beyond product selection, having access to a specialized nurse can help you understand what to expect, what is normal, and what is a potential problem. That guidance can make getting back to living, a much faster process.

The model of care at Ostomy Care & Supply was visionary and has inspired others. Although not funded by the provincial health system, there is no fee for people to see the nurses if the Centre is their supplier. People with an ostomy can access nursing support at all points in their journey; before surgery, after, and even decades later. Life with an ostomy can pose new challenges as people go through pregnancies, return to sports and activities, and age, which brings changes in body shape and physical abilities.

One of the nurses had a dream to work at the Centre and worked

by Arden Townshend

hard to make it come true. Lisa Abel completed the specialty training in the Wound, Ostomy, Continence program at Emory University in 1996, and worked at several hospitals in the area over the years. In that work, she met Helen Manson, the founder of the Ostomy Care Centre, a nurse with an ileostomy herself. Lisa loved Helen’s unique vision of client-centered care, and says, “having worked with a variety of the previous staff during my time in acute care I knew coming to work here would be amazing.”

After raising her children, Lisa knew the only place she wanted to work was at the Ostomy Care & Supply Centre.

The opportunity to focus on working one-on-one with ostomy clients motivated Lisa through the two-year process of requalifying to practice nursing. She achieved her dream of joining the nursing team in 2018. Lisa’s commitment shines on through supporting people living with an ostomy to successfully resume the facets of their lives that are important to them. Her humor, creativity and sincere caring are evident in all her interactions. Lisa says regularly, “best job ever.” n *article is a benefit of Ostomy Care & Supply being a Gold Sponsor for Step Up 2022

SUMMER 2023 OSTOMY CANADA 21

Message from our urs... ostomy family to yo Ann Durkee-MacIsaac, Chair of the Board of Directors (Hebron, NS): Despite the challenges faced during COVID-19, we faced

them together, and discovered many great lessons along the way.

We have been changed by this experience and going forward we have grown stronger. The Directors of Ostomy Canada share a special bond and that is “YOU.” Steve Maybee, Secretary/Treasurer (Mississauga, ON): From the

perspective of the Treasurer and as a Director of Ostomy Canada Society, it has been a pleasure working with a professional Executive Director who has left the organization in a strong financial and organizational position, with new updated programs to support individuals with ostomies across the country.

Joan Peddle, Director (Moncton, NB): As I reflect on my time on

the Board, I have enjoyed learning and getting to know the Atlantic region’s Chapters and Peer Support Groups. Our time during and following the pandemic has been different, but I have enjoyed the interaction with everyone in the Atlantic area and hope to connect with more people this coming year. You are the reason we have a great organization and I am here to support you all in your journey as an ostomate. We continue to work raising awareness and advocating for improved products. We have made progress and I look forward to my next term as your Atlantic Administrator.

Janet Paquet, Director (Hamilton, ON): ‘Volunteerism’ is one of

the most selfless acts that we can become involved in. Thank you to all of the volunteers in our Chapters and Peer Support Groups. By working together, we can enrich the lives of new ostomates, offer support and ultimately erase the negative stigma associated with ostomy surgery.

Stephanie Grace, Director (Newmarket, ON): As a new member

of the Board of Directors, I am honoured and thrilled to be part of such an amazing organization. Being an industry partner and a product manager at Hollister Limited, the vision and mission of Ostomy Canada Society is aligned with what I wake up every morning to do. I strive to help make life more rewarding and dignified for people living with an ostomy so that they can enjoy living life to the fullest. I look forward to collaborating with my fellow board members to help raise awareness across Canada.

Troy Curtis, Director (Ottawa, ON): We have had a busy start to

the year with many webinars and initiatives, which has given me a chance to speak and interact with more Ostomy Canada supporters. Your attendance and participation over the past few months has been so appreciated, not only by Ostomy Canada, but also by our 22 OSTOMY CANADA SUMMER 2023

partners. As we enter the second half of 2023, I wish you all the best and hope to count on your support in promoting this year’s Step Up for Ostomy campaign.

Jayne Kerr, Director (Thornbury, ON): All the best to our osto-

my family across Canada. We applaud your dedication and as a reminder, we (the Nominating/Succession Planning Committee) are always welcoming new participants. Contact me at Jayne.kerr@ ostomycanada.ca if you are interested in volunteering.

Jacqueline Bloom, Director (St. Thomas, ON): Friends, thank you

so much for your generous support. It’s folks like you who make our work possible. Your contributions enable us to accomplish our mission here at Ostomy Canada. We’re excited that you’ve chosen to help us along our journey and we hope to develop a long and fruitful relationship.

Ian MacNeil, Director (Ottawa, ON): Ostomy Canada Society has made substantial progress in helping persons with an ostomy to live life to the fullest. Our website is becoming the ‘GO to Place to Go for Ostomy News, Information, and Social Interaction.’ Kudos go out to all of the people who have redesigned our website and also ‘Kudos’ go out to the Youth Camp organizing committee and volunteers. Bravo!

Real Lamarche, Director (Granby, QC): Un petit mot pout les

francophones du Québec et de touts les autres régions du Canada.

Profitons de l’été pour se ressourcer et prendre soin de soi et de tous nos proches. L’automme nous amenera de nombreuses activités diverses pour la communauté des personnes stomisées.

Randy Hull, Director (Winnipeg, MB): Winnipeg Ostomy

Association has just moved into its 51st year of providing support and information to ostomates and their families. To be more representative of all members and to start our next chapter, we are changing our name. Ostomy Manitoba Association (OMA), will be a more inclusive representation of our members province-wide. We are both pleased and encouraged that we have been able to maintain a healthy membership base and continue operations during very trying COVID times.

Debra Carpentier, Director (Regina, SK): The ‘Prairie Province’

tradition of cooperation and collaboration continues, one which supports the whole community in good times and in tough times.

Thank you for your support over the past year and I look forward to your support in the coming year. It is in working together that we gain strength.

Andrea (Andy) Manson, Director (Parksville, BC): Greetings and

best wishes from the Pacific Region. Our Pacific Region Chapters and Support Groups are meeting in person, on Zoom or a combination. If you are visiting out west this summer, consider attending a meeting to hear what is happening in this part of the country. We are always looking to expand our support of people living with an ostomy. If you know of anyone interested in facilitating a group in our area, please let me know. I send a big thank you to all for your continued support of Ostomy Canada.

AJ Leveille, Director (Langley, BC): This year has seen a lot of

change at Ostomy Canada Society. Collectively we can look back on a productive year and be proud of our accomplishments. As we ease into summer, it is my wish that everyone involved in this fantastic community can find some time to enjoy themselves. Look up from the daily grind and enjoy all that life has to offer, because as we know Summer is short and another Fall is just around the corner.

And finally, as Chair of the Board of Directors, I personally want to thank each of our Directors for putting both their hearts and souls into the vision, values, and the mission of Ostomy Canada.

We all try to come alongside people living with an ostomy and interact with our supporters so that they know that we see and hear them. We are in this together; all of YOU and all of the Directors. We send all of you a special thank you. From all of us on the Ostomy Canada Society Board, “Be safe, be well, and prosper.”

Steve Maybee, secrétaire et trésorier (Mississauga, Ontario) : En

tant que trésorier et directeur à la Société canadienne des personnes stomisées, j’ai été heureux de travailler avec un directeur général chevronné qui a quitté l’organisme en le laissant en bonne santé sur le plan financier et organisationnel et en ayant actualisé des programmes destinés à soutenir les personnes vivant avec une stomie partout au pays.

Joan Peddle, directrice (Moncton, Nouveau-Brunswick) : En

réfléchissant à mon parcours au sein du conseil, je réalise que j’ai aimé apprendre à connaître les associations locales et groupes de soutien de la région de l’Atlantique. Les choses se sont passées différemment durant la pandémie, mais je suis heureuse des interactions que j’ai eues avec les personnes du coin et espère en rencontrer encore plus cette année. Vous êtes la raison pour laquelle notre bel organisme se porte bien et je suis là pour vous appuyer tout au long de votre cheminement en tant que personne stomisée. Nous continuons de travailler à accroître la sensibilisation et à plaider pour de meilleurs produits. Nous avons réalisé des progrès et j’ai hâte d’entamer mon prochain mandat d’administratrice pour la région de l’Atlantique.

Janet Paquet, directrice (Hamilton, Ontario) : Le bénévolat est

l’une des activités les plus altruistes que nous puissions accomplir.

Je tiens à remercier tous les bénévoles au sein de nos associations locales et groupes de soutien. Ensemble, nous pouvons enrichir la vie des personnes nouvellement stomisées, leur offrir du soutien et ultimement, éradiquer les préjugés négatifs associés à la stomie.

Stephanie Grace, directrice (Newmarket, Ontario) : En tant que

nde a gr e tr o n e d ge a s es M famille à la vôtre Ann Durkee-MacIsaac, présidente du conseil d’administration (Hebron, Nouvelle-Écosse) : Malgré l’ampleur des défis auxquels

nous avons été confrontés durant la pandémie de COVID-19, nous les avons affrontés ensemble et avons tiré d’importantes leçons en cours de route. Cette expérience nous a transformés et nous a rendus plus forts. Quelque chose de spécial unit les membres de la direction de la Société canadienne des personnes stomisées : VOUS.

nouvelle membre du conseil d’administration, je suis honorée et ravie de faire partie d’un organisme si formidable. Comme je joue le rôle de partenaire de l’industrie et de gestionnaire de produit à Hollister Limited, la vision et la mission de la Société canadienne des personnes stomisée s’harmonisent totalement à ma raison de me lever tous les matins, c’est-à-dire rendre la vie des personnes stomisées plus gratifiante dans la dignité, afin qu’elles puissent en profiter pleinement. Je suis enthousiaste à l’idée de collaborer avec mes homologues du conseil pour accroître la sensibilisation partout au Canada.

Troy Curtis, directeur (Ottawa, Ontario) : L’année a commencé

en force, remplie de webinaires et d’initiatives en tous genres, qui m’ont permis de prendre la parole et d’interagir avec encore plus de sympathisants de la Société canadienne des personnes stomisées.

Votre participation à ces activités au cours des derniers mois a été appréciée non seulement par l’organisme, mais aussi par nos partenaires. Au moment où nous entrons dans la deuxième moitié de SUMMER 2023 OSTOMY CANADA 23

2023, je vous souhaite le meilleur et j’espère pouvoir compter sur votre aide pour faire la promotion de la campagne annuelle Step Up for Ostomy.

Jayne Kerr, directrice (Thornbury, Ontario) : Je souhaite le meil-

leur à notre famille des personnes stomisées d’un bout à l’autre du Canada. Nous saluons votre dévouement et les membres du comité de nomination et de planification de la relève vous rappellent qu’ils accueillent toujours de nouveaux participants. Si vous souhaitez faire du bénévolat, veuillez communiquer avec moi à Jayne.kerr@ ostomycanada.ca.

Jacqueline Bloom, directrice (St. Thomas, Ontario) : Mes chers

amis, je tiens à vous remercier pour votre généreux soutien. Ce sont les gens comme vous qui rendent notre travail possible. Votre apport nous permet d’accomplir la mission de la Société canadienne des personnes stomisées. Nous sommes reconnaissants du fait que vous ayez choisi de nous aider durant notre parcours et espérons que notre relation sera longue et fructueuse.

Ian MacNeil, directeur (Ottawa, Ontario) : La Société canadienne

des personnes stomisées a réalisé des progrès considérables en matière de soutien des personnes aux prises avec une stomie, pour les aider à profiter pleinement de la vie. À mon avis, notre site Web est en voie de devenir la référence quant aux nouvelles et aux renseignements sur la stomie, ainsi qu’à l’interaction sociale. Le mérite revient à toutes les personnes qui ont repensé le site. Soulignons également le travail du comité organisateur du camp jeunesse et des bénévoles. Bravo!

Réal Lamarche, directeur (Granby, Québec) : Un petit mot pour

les francophones du Québec et de toutes les autres régions du Canada. Profitons de l’été pour nous ressourcer et prendre soin de nous et de tous nos proches. L’automne apportera son lot d’activités diverses pour la communauté des personnes stomisées.

Randy Hull, directeur (Winnipeg, Manitoba) : Depuis maintenant

51 ans, la Winnipeg Ostomy Association soutient et informe les personnes stomisées et leurs familles. Pour mieux représenter tous les membres et commencer un nouveau chapitre de notre histoire, nous changeons de nom. L’Ostomy Manitoba Association (OMA) fera preuve d’une plus grande inclusion à l’égard des membres de l’ensemble de la province. Nous sommes à la fois ravis et encouragés de constater que nous avons pu maintenir un bon bassin de membres et poursuivre nos activités pendant la période éprouvante de la pandémie de COVID-19.

Debra Carpentier, directrice (Regina, Saskatchewan) : Dans

notre province des Prairies, la tradition de coopération et d’entraide 24 OSTOMY CANADA SUMMER 2023

se poursuit pour soutenir l’ensemble de la communauté dans les bons moments comme dans les plus difficiles. Merci pour l’appui que vous nous avez manifesté durant la dernière année. J’ai hâte de collaborer avec vous au cours de la prochaine. En travaillant ensemble, nous deviendrons plus forts.

Andrea (Andy) Manson, directrice (Parksville, ColombieBritannique) : Salutations et meilleurs vœux de la région du

Pacifique. Les membres de nos associations locales et groupes de soutien se réunissent en personne, sur Zoom et en mode hybride. Si vous passez dans l’Ouest cet été, pensez assister à une réunion pour savoir ce qui se passe dans ce coin du pays. Nous sommes toujours soucieux d’offrir du soutien à encore plus de personnes stomisées.

Si vous connaissez une personne qui souhaiterait animer un groupe dans votre région, n’hésitez pas à m’en faire part. Un grand merci à vous tous pour votre appui soutenu à l’égard de la Société canadienne des personnes stomisées.

AJ Léveillé, directeur (Langley, Colombie-Britannique) : Cette

année, la Société canadienne des personnes stomisées a connu de grands changements. Ensemble, nous pouvons constater à quel point elle a été productive et être fiers de nos réalisations. Alors que nous entrons dans la saison estivale, je souhaite à toutes les personnes impliquées dans notre merveilleuse communauté de passer du bon temps. Éloignez-vous un peu du quotidien et profitez de tout ce que la vie a à offrir; l’été est court et l’automne arrivera plus vite qu’on le pense!

Enfin, en tant que présidente du conseil d’administration, je tiens à remercier tous les membres de la direction de consacrer cœur et âme à la vision, aux valeurs et à la mission de la Société canadienne des personnes stomisées. Nous tentons tous d’appuyer les personnes vivant avec une stomie et d’interagir avec nos sympathisants pour qu’ils sachent que nous les voyons et les entendons. VOUS et tous les membres de la direction participez à cette belle aventure de solidarité. Nous vous en remercions chaleureusement. Prenez soin de vous, portez-vous bien et profitez pleinement de la vie – c’est la raison d’être de la Société canadienne des personnes stomisées. n

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OSTO MY CA N A DA

Post-Secondary

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STUDENT AWARD

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

Award Objectives • To motivate post secondary students to be informed about Ostomy Canada Society services and its support of people in Canada living with an ostomy.

• To provide financial support to a postgraduate student •T o encourage volunteerism and leadership that “gives back” to the ostomy community.

> How to Apply

Eligibility Criteria 4 Applicants have up to two (2) years from the date of completion of their Canadian education program such as one year of university or apprentice or trade program to apply. Proof of date of completion must be provided.

For eligibility criteria and further info see: www.ostomycanada.ca/our-awards > Deadline for submissions is May 1, 2024.<

Edmonton Ostomy Support Group Rises from the Ashes of a Large Chapter Disbanding

by Anne Le, RN. NSWOC A year ago I wasn’t quite sure what I was getting into when I decided to try and set up an ostomy support group. I felt that the ostomy community was missing out on something valuable ever since the former Edmonton Ostomy Chapter had dissolved. I knew there were people out there learning how to live with a new ostomy and who could use more information and more support. After reaching out to Ostomy Canada Society, I was happy to learn that I would have the support of a few members of the prior Edmonton group, as well as members from other chapters across Canada. In addition, a patient of mine has been a strong advocate for a local peer support group, so in April of 2022 we had our first coffee session with a total of four people. The number of attendees doesn’t matter as much as being able to help those who are reaching out. The goal is connecting people who have similar health challenges. Month by month we kept going by meeting on a regular basis for a coffee chat session. I recently spent some time contacting all of the members of the prior group. I have actively sought out my NSWOC colleagues in Edmonton, Community Home Care nurses and some medical supply stores, passing on the word of what we are doing and encouraging everyone to try out the coffee sessions. The best news of all is that we are reaching out and slowly our group is growing at the cost of a cup of coffee and a couple of hours per month. Today I’m so pleased to say that we have about 15 people who are participating in some way with the Edmonton Ostomy Group.

I want to encourage anyone who is thinking about starting a peer support group, or thinking about attending a meet-up to just take action and do it. My initial contact was Ostomy Canada Society. I then created an email account to provide a contact point, Edmonton.osg@gmail.com. After finding a coffee shop that could accommodate a small group with reasonably priced drinks, snacks and free parking, an email was sent out to local NSWOCs, community nurses and medical supply stores to inform them that a local Ostomy Support Group was available. At the meet-ups I share previous editions of Ostomy Canada magazine, as well as, brochures on the Visitor Program and the Disability Tax Credit. These sometimes become part of our coffee chat. This is an opportunity for me to share what I understand and know about ostomy care with the hope that it will positively impact someone else and to also learn from others.

We listen to each other’s challenges and as a group we try to address questions and reassure one another. It’s also a low-key social event; family and friends are always welcome and there is no expectation for any person who attends to stay the whole two hours or to attend every coffee meet-up. As a facilitator, I don’t have the answers to every question that arises. This group really depends on others who have experienced the ups and downs of living with an ostomy and they want to share their experience in order to support others.

There is always a sense of uncertainty on how well a meeting will be attended and what people may want to talk about. However, I am reassured that this is an overall positive group. We learn from sharing our experiences and connecting with others may take away some of the feelings of being alone. “We are all healers of each other...and healing happens between people” - Rachel Naomi Remen.

What I wish for this community is that in the long run, we all laugh a little harder, cry a little less, and smile a lot more. n

So, I played softball yesterday…

About the second inning I smelled what I thought was horsesh*t …. It was 98 degrees and hot as hell outside. I’m drenched in sweat as I’m playing the catcher position.

I asked the umpire, “do you smell that?” She said “yeah, maybe there is a horse stable around here”.

On a whim I lift my shirt and realize I busted the seal on my temporary ileostomy pouch by my belly button … So there is crap all over me ….

In the moment I wanted to panic. It was the first time I had this happen while I was doing something active, but I gathered myself and told myself to chill out.

In between innings, I ran to my car and grabbed my emergency bag. I went in the park house bathroom and cleaned myself up. I changed my ileostomy appliance and washed my clothes and my stealth belt in the sink.

I followed my same set up and laid out all of my materials the same way that I do at home and just did what I normally do.

I went back to the game and then played two more games. We won two out of three games; this was a playoff game, and now we go to the championship.

I never thought I was going to be able to deal with an ileostomy, much less change it in a park house! It was the first day that I missed my J-pouch but since I didn’t have that now I had to make what I have work.

All I can say is, do not let a situation dictate your life, you dictate your life to the situation. n Christopher M lives in Aberdeen, New Jersey and is a member of Facebook’s The Real Ostomy Support group. Reprinted with permission.

SUMMER 2023 OSTOMY CANADA 27

Ostomy Canada

YOUTH

CAMP Thank you!

a Go-kart and helmets, and drive the counsellor back to the main stage. I was the driver, and was able to have a very good laugh afterwards as I drove the Go-kart back. Never thought I would have to drive a counsellor with a blanket over his head! The second memory that will stay with me is the final campfire, the final event of camp where we all get together one last time before we all need to leave.

The boys’ cabins were allowed to dump water on our counsellors as a reward for drinking a lot of water over the week. I am not going to forget dumping water on one counsellor who ran away jokingly.

All in all, I am glad that this was my final year, ending on a positive note with nothing but fun. Thank you Ostomy Canada and Easter Seals for giving me a place to call home away from home. Thank you Ostomy Toronto for sponsoring me and giving me this opportunity! ~ Samuel-Charles Archer

S & C CURRIE PHOTOGRAPHY

Reprinted with permission from Ostomy Toronto

Entering my final year of Ostomy Canada Youth Camp, I knew that it was going to be difficult to say goodbye to everyone.

However, as soon as the bus drove onto the camp grounds, every worry seemed to disappear. My last experiences can be described as nothing but pure fun. Ostomy Canada Youth Camp has always been a place where I can be myself, and this year was no different.

Two events in particular stood out to me during my last week. The first was during a game of ‘Phobias’, where the kids had to discover the phobias of counsellors and bring them back to the main area in the camp. With one counsellor ‘scared’ of trees, a group of other kids and I decided to put a blanket over the counsellor’s head, set up 28 OSTOMY CANADA SUMMER 2023

I want to personally thank the Winnipeg Ostomy Association and Ostomy Canada Society for this amazing opportunity for my son. Due to years of trials, testing and numerous doctor visits, he was older when he received his ostomy. He was 12 years old and was not impressed at first. But then like most boys he learned he could make his ostomy pass gas which he thought was impressive.

I was okay with that because it meant that in his own way he was accepting it. It took a little bit of time for him to accept having his ostomy, but he truly was okay with it after his first time at camp. At camp he made numerous friends who have the same type of ostomy or have some of same obstacles that he has faced.

He has been planning our next summer vacation around his next camp before it was even announced if they would be having one. I was not able to book camping or visits with family until after the next camp.

It was heartwarming to see him have such an amazing time at the camp, he told me he felt normal there. Although as a parent I reassured him that he is normal, he had to find a connection there that I could not provide for him. For that I am forever grateful to the organizations, volunteers and camp officials that welcomed my son.

Thank you from the bottom of my heart for providing this opportunity for my son.

Sincerely, Samantha B Reprinted with permission from Ostomy Manitoba

It’s What Some of us do When Confronted with Disease

by AJ Leveille

It’s funny how much your life can change because of one word: disease. Back when I was in university had someone told me about my current career and lifestyle choices, I would have called their bluff.

For me, university certainly didn’t include the words: ostomy, colitis, stoma, online retail or ecommerce. As interesting as the internet was in its infancy, I certainly was not a part of it. Jump ahead 30 years and the words: disease, ostomy, colitis, stoma, online retail and ecommerce are now used in my routine vocabulary. The web, is now daily life for nearly everyone on the planet.

Carly Alexandra Throughout my journey with illness, I was constantly learning about my new self and what life would look like moving forMany of the readers here have had a similar journey through ward. My time was filled learning about the a disease or have been there to support their loved ones disease, the various surgeries, all the prodthrough this time of need. A path such as this has molded ucts needed and possibly even a change who we are and has most likely created some major life of career and lifestyle. Being immersed in this research, it didn’t take long to develchanges ultimately shifting how we see the world. op a plan to help sick people across North America. Soon after, a business was born to help customers with that she can truly make a difference in people’s lives. She found that medical needs to live life to the fullest. Since 2016 we have been difference here, and works tirelessly to answer your calls, deal with hyper-focused on being the absolute best in this field. To do this, vendors, place the orders and does all things required of the office. we have collaborated with people who understand what it is like to Simply put, she kind of runs the show, and we’d be lost without her. live with an ostomy or a disease.

Many of the readers here have had a similar journey through a Carly from @ostomateandthecity joined InnerGood after disease or have been there to support their loved ones through this meeting with the young adults Vancouver Ostomy support group. time of need. A path such as this has molded who we are and has Carly is a two-time cancer survivor whose life with a colostomy most likely created some major life changes ultimately shifting how began in 2018 after a pelvic exenteration surgery. Carly is a perwe see the world. InnerGood has embraced this shift and we aim to fect fit as our Marketing Coordinator because she can assist our use it daily to try and brighten the lives of our customers. We wish customers with her first hand understanding of our product, illness you all a happy journey; wherever you are along it. n and the ostomy lifestyle. Carly brings an amazing energy to our team and she has played an integral part to fulfilling our mission.

The team at Innergood.ca and Innergoodus.com (USA site).

Alexandra, a cancer survivor and dog mom to two cuties, joined Submitted as part of InnerGood’s support of the 2022 Step Up InnerGood as our office manager after wanting to work somewhere for Ostomy program.

SUMMER 2023 OSTOMY CANADA 29

Bravery BAG COVERS

by Lindsay and Josh Diamond

“We need to move quickly. Your daughter needs to have colostomy surgery, there is no other choice.”

A moment we will never forget.

At only four years old our daughter Kenzie woke up from her surgery weak and confused as to why ‘her tummy was on the outside’ and why there was a bag attached to it. As the days went on, her physical self improved, but the emotional trauma lingered. She was scared. She was uncomfortable. She was embarrassed. She insisted on keeping her stomach covered at all times, afraid to look down on her own or even let others see. As parents, we put our minds to how we could help her through this transition. How could we help her feel confident, beautiful, safe and in hopes that eventually she would feel proud that this is part of who she is.

Searching the web for ostomy care, we stumbled upon a supplier on Etsy who created custom bag covers. We asked her to create designs of Kenzie’s favorite things..... Spider-Man, Minions, Dinosaurs, just to name a few. When they arrived a few weeks after her surgery we asked her if we could try them out. The moment spoke for itself. Seeing the glow permeate from her wide smile

30 OSTOMY CANADA SUMMER 2023

John Hartman, Lindsay Diamond and Kenzie

filled our hearts, a new moment we will never forget. The change in her confidence was noticeable. Having the ability to cover the bag answered that great big question of how will it be perceived. It didn't need to be perceived anymore, until she was ready to share it on her terms.

Kenzie is thriving months into her ostomy journey, and the bag covers remain a daily part of her routine. As parents who have gone through this emotional journey, we want to make a difference in the lives of the next family and all the children and teens who need an ostomy bag. We want to help children feel confident with their bag!

Our vision: To give every kid in the world stylish and fun Ostomy

Bag Covers to give them more confidence for their journey ahead.

Interested in learning more? Visit: www.braverybagcovers.com or contact us at info@braverybagcovers.com

All in just one y ear Just over one ye ar ago, our daug hter Kenzie had emergency Osto an accident that my Surgery. A jou led to rney we as paren inspired us to giv ts never imagin e back to the in ed but credible Ostomy community.

In May 2022 w e launched Brav ery Bag Covers produce and dona – a philanthropic te a gift of confi mission to dence to children Ostomies! To da around the wor te we have raise ld with d over $120,000 and completed ou production of 210 r first 0 Bravery Bag Co vers.

It is with immen se gratitude that on her one-year 2022 we delivere anniversary in De d our first shipm cember ent of Bravery Ba for Sick Children g Covers to The H (Toronto) and BC ospital Children's Hospita shipments of Br l (Vancouver)! An avery Bag Covers d the have continued… to clinics, hospita organizations an ls, d directly to indiv iduals.

We are incredib ly grateful for th e love and suppor A special thank t we have receiv you to Ostomy ed.

Canada Society, our partner orga offering operation nization al and tax receip t support.

If you are intere sted in learning www.braverybag more, please visit covers.com or ple us at ase contact us at info@braverybag covers.com We look forward to hearing from yo u an d working together lives of those ch to brighten the ildren and youth with Ostomies aro und the world.

Lots of love and gratitude,

Lindsay Brand and Josh Diamond

SUMMER 2023 OSTOMY CANADA 31

IT’S OKAY TO NOT BE OKAY My Journey with an Ostomy

by Benji Beaudoin

I have never written about my story or journey until now.

However, after two and a half years, I felt like it was time to share what happened to me. I will share the before, the during, the recovery, and the other stages of life I would have to deal with; even if it scared me, or I didn’t want to face it. Please sit back and read about my journey and the many highs and lows I’ve faced.

It all started in the summer of June 2020. The pandemic was causing chaos on its own, but that’s a story we’re all too familiar with. In June 2020, I decided to go to Toronto to visit a friend of mine, whom I hadn’t seen in ages. I got on the GO Bus Express at the Hamilton GO Station towards Union Station in Toronto. I was so excited about this trip. I worked in retail at the time and was getting away from work for a few days!

I arrived in Toronto on June 15th. However, my friend and I ended up having an unexpected argument over childish things which resulted in me not staying with them like we had planned.

This left me wondering if I should just go home, or if I should do something about my situation. I decided to stay in Toronto, and found a cute little inn within the downtown core. I got settled in and set up for the next few days. Little did I know what was going to happen to me a few days later.

I met up with some friends, went no memory of anything that had hapIt took me a very long time out to enjoy the night-life on Thursday, pened in the last 12-24 hours. When a to be okay and I still have days June 18th; just like most 35-year-olds nurse came in, I asked how I got there, where I get stressed, freaked out, would do. I felt fine during the day. and what had happened to me. The overwhelmed, and feel like Then nightfall came and things took nurse responded that a doctor would a turn for the worse. I asked a friend be in to see me momentarily. Moments something was taken from me. of mine who was nearby to pick me up later, the doctor arrived. He explained Grief is a powerful mechanism; some ginger-ale, water, and Gatorade to me that my electrolytes were depletit can make or break you. But I’ve because I was throwing up constantly. ed: my magnesium, thiamine, potasI couldn’t hold anything down. My sium, and sodium were gone. I was in decided to not let it break me. friend decided to stay with me to keep complete shock. I didn’t know how or an eye on me. The last thing I remember was that at 7:30 am on why this had happened. However, I had to drink large quantities of June 19th, I went to the bathroom and threw up some water. After fluids, mostly ginger-ale and Gatorade, every day for about a week, that, it’s all blank. I had collapsed on the floor, and wasn’t breathand only then began showing signs of recovery. ing or responding.

Well, at least that’s what we thought. As I started getting my Paramedics revived me briefly, but I passed out again, and I was bearings again, I noticed that I started to bleed from my rectum. transported to Toronto Western Hospital. A day later, I woke up in This was where things started to get scary. I went for the scope the Intensive Care Unit with two IVs and a catheter in me. I had that they normally do to check your colon, and they found that 32 OSTOMY CANADA SUMMER 2023

my large intestine was inflamed from ulcerative colitis. This was a complete and devastating shock to me. I had no idea that I was walking around, and going on about my days with a disease like that.

The doctors gave me two options; try an immunosuppressant called Remicade or undergo surgery. Of course, I chose the first option.

We tried two times at two different strengths of the drug, but it showed no results. My inflammatory markers kept going up, which meant I had no choice but to have surgery. There I was, in Toronto Western Hospital, right in the middle of the pandemic, and I had to make a life-changing choice without my family there to help me make such a difficult decision.

July 11th came and I went for my surgery. I had been in the hospital for just over three weeks at this point, but this was the day I would be physically changed forever. Midnight came, and off to the operating room I went. Four hours later, I woke up in the recovery room, groggy and very tired; but I could feel that something was different with my body. On my right side, there it was! An ostomy bag. I wanted to cry, but I was too sore, too tired, and too groggy to.

They moved me to the surgical floor where I would stay for the next few days, until I was discharged on July 15th. My mom and a friend of hers picked me up and brought me home. I would spend the next little while recovering at my mom’s place. Or so I thought.

Over the next three days, I tried everything and anything pos-

r o re o t s n I o re d t e v i l de do o r r u o y e re h w y an n ad a i n Ca

sible to eat and drink; anything to keep my strength up, but I kept throwing up. It was frustrating, to say the least, having just gotten out of surgery.

Then, the afternoon of July 18th came. I went to the bathroom and noticed the liquid inside my ostomy bag was black. My mom immediately called my nurse at the hospital, and I remember watching my mom’s face going as white as a ghost.

It was time to call 911. Something had gone wrong.

I was rushed into the hospital that evening, where I found out that my bowel had snapped, and the black stuff was from what was inside my bowel. I underwent another four-hour surgery to remove my bowel, as well as all of the black liquid, and to have my ostomy repositioned from my right side to my left side. Now the real recovery time could begin, and I finally had to come to terms with what I had lost and gained through this entire ordeal.

Here I was, in my second hospital stay for almost another full month. After recovering from back-to-back surgeries, it was finally time to go home.

August 1st arrived, and it was one of the most terrifying days of my life. I was going back to my actual home. Home, a place that seemed so unfamiliar to me now; it felt like it was not real. When I walked inside the apartment door, I looked around but it felt so foreign and unknown to me. This was where I had to allow reality

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A piece of advice I can give anyone reading this article is to reach out to local ostomy groups on social media, use them to watch the videos, read the stories of others, and how you can relate to them.

They will give you tips and recommendations on what might work, on what has helped them.

It makes you feel less alone.

34 OSTOMY CANADA SUMMER 2023

to set in. I was home, and I was now in for the battle of my life. Namely, recovery and coming to terms with everything I had been through and was going to have to face going forward. There were so many unknowns and ‘what if’ scenarios.

The first few weeks were filled with strange people coming into my home: PSWs, social workers, dietitians, special nurses, etc. It was very overwhelming, as you can imagine. However, as time went on, the visits became less and less, and the counseling sessions were slowly decreasing. I found myself beginning to understand that “it’s okay to not be okay”. Those words spoke volumes to me as I began the long and endless road to recovery.

The road to recovery wouldn’t be easy for anyone in this situation. Like most people, I faced my fair share of rough patches: learning how to change the device on my own, freaking out when an accident would happen, blockages, hospital visits for check ups, and more. It took me a very long time to be okay and I still have days where I get stressed, freaked out, overwhelmed, and feel like something was taken from me. Grief is a powerful mechanism; it can make or break you. But I’ve decided to not let it break me.

I’ve taken the time to grieve over losing the organs I lost, and over the life and body I used to have. I use it as a motivator; a motivator to keep me going and growing. A piece of advice I can give anyone reading this article is to reach out to local ostomy groups on social media, use them to watch the videos, read the stories of others, and how you can relate to them. They will give you tips and recommendations on what might work, on what has helped them.

It makes you feel less alone.

If it wasn’t for groups like that, magazines like this publication, and other forms of media, I can wholeheartedly admit that I wouldn’t be where I am at all. Or, for that matter, here and alive at all. I wake up every morning feeling grateful to be alive, and grateful for the friends, family, and loved ones I’ve surrounded myself with.

Here I stand, two and a half years later. July marked three years in my recovery process. It is a never-ending process, especially in my case, as my circumstances have caused me to never have the chance to have the reversible surgery that some are fortunate to have. I will never forget the dates of July 11th and 18th, 2020; nor should I. They will forever mean something to me.

My advice to you is that you have to constantly work at it; you have to follow the rules, follow the diet, keep exercising, keep talking about how you’re feeling, and not be afraid to say that one little sentence: “It’s okay to not be okay.”

If there are any words of encouragement I could give anyone reading this article, it’s to never be afraid to say “it’s okay to not be okay.” It takes your husbands, wives, spouses, family members, parents, friends, and even strangers to keep you going. I went from being 107 pounds pre-surgery, to a happy and healthy 178 pounds postsurgery, and I’m still here, fighting the good fight, and never letting those demons knock me down.

You can do it too!

To quote one of my favorite songs by the artist Katy Perry: “Don’t doubt it, don’t doubt it. Victory is in your veins. You know it, you know it. And you will not negotiate. Just fight it, just fight it. And be transformed. Cause when the fire’s at my feet again. And the vultures start circling. They’re whispering, you’re out of time. But still, I rise. This is no mistake, no accident. When you think the final nail is in, think again. Don’t be surprised, I will still rise.”

Stay strong, mighty warrior. n Benji Beaudoin lives in Windsor, ON

Celebrating 50 years of Ostomy support in Atlantic Canada

by Ed Tummers

The first ostomy support group in Atlantic Canada was founded 50 years ago in 1973, a full decade from the time Ostomy Canada Society (Note 1) was incorporated in 1962.

The location was chosen to be close to the regional hospital where the majority of ostomy surgeries were performed. The group was originally incorporated as United Ostomy Association Inc Nova Scotia Chapter.

The original reason for forming the group was to provide a Visitor Program to hospital in-patients from across the region. The charter members were also committed to providing continuing inperson support in the communities where people lived. A small group, led by charter members Bette Yetman, Ruth Kenney ET, and others, recruited ostomates to form local community-based groups where they could share experiences and find mutual on-going support after being discharged from the hospital. The 1970s was a period of rapid expansion throughout the four Atlantic provinces, with new groups being incorporated in 15 communities in just nine years. (Note 2. A complete list of Atlantic Region communities which have hosted ostomy support groups) To describe what it was like 50 years ago for a person living with an ostomy in Nova Scotia, let me introduce Geraldine “Gerry” Mulcahy, who was one of the earlier persons having ostomy surgery in Nova Scotia. Her personal journey is representative of what those early days were like for people living with an ostomy.

Gerry suffered with ulcerative colitis for many years. Like so many other Nova Scotians at the time, she had family and relatives in New England, or as it was known here: “The Boston States”.

It was an overnight driving trip to get there, and Gerry knew the location of every publicly available washroom between Halifax and Boston.

Eventually, she could no longer manage her colitis and in 1956, she was admitted to the hospital for surgery. Hers was the first proctocolectomy ever performed in the Halifax Infirmary. Little ostomy information was available at that time. Gerry was in shock when she woke up from surgery and saw the rubber bag that looked like a

Chapter President Burleigh Wile and Visitor Coordinator Gerry Mulcahy with Ruth Kenney ET (Halifax Chronicle-Herald 1993)

long hot water bottle hanging halfway down her leg (she’s only five feet tall), held on with Torbot Liquid Bonding Cement, an extra strong white rubber latex liquid adhesive used to stick ostomy appliances to the skin. This was very unsuitable and eventually caused skin problems.

The 1950s version of an ostomy pouch By chance, through a newspaper article, she learned of Mr. Irving Botvin of the Torbot Company in Rhode Island. Irving, himself an ostomate and a tool and die maker, started making discs and pouches in his basement.

Gerry went to Rhode Island where he made a special disc of deep convexity with a bar across the bottom and the top. The first year, she had to fly to Rhode Island three times for further fittings.

Gerry felt these considerable expenses should be deducted under the Income Tax Act. When they were rejected, she wrote personally to the Minister of Finance explaining her situation. Her request was granted.

Ostomy expenses would be allowed, along with the travel to Rhode Island. Because of her action with Revenue Canada, ‘ostomy prosthesis’ were added to income tax claims. This eventually led to both the Medical Expense Benefit and the Disability Tax Credit.

Before the existence of ostomy support groups in Nova Scotia, SUMMER 2023 OSTOMY CANADA 35

her surgeon, Dr. F.J. Barton, often requested that Gerry visit patients throughout the province, which she did at her own expense. When Gerry first learned that ostomy chapters were being formed in Nova Scotia, she rejected the idea of joining. After 17 years of living with an ostomy, she was comfortable with her Torbot appliance, and using her own words said, “I felt that I already knew everything I needed to know”. Finally, in 1977, Bette Yetman convinced her to come to a meeting. To her amazement she saw people she knew, but who she had no idea that they too were living with an ostomy. Also, when she saw all the amazing new products that were available, she admitted that perhaps, “I guess I didn’t really know everything!”

It was not long before Gerry became very involved with the chapter and totally committed. She attended many United Ostomy Association Annual and Regional Conferences, but her main interest had been as Coordinator of the Chapter Visiting Program.

Through a controlled system of Visitor Certification, eventually the authorization was granted to officially recognize volunteer Visitors to ostomy patients. As time progressed, patient authorization cards were introduced, and regular visitor training sessions were conducted. Her Visiting Seminars attracted members from outlying chapters throughout the region. In 1982, along with Ruth Kenney ET, Carolyn Vickers, Bette Yetman, Bertha Power, and Mary O’Connor, Gerry co-authored the Handbook for Ostomates booklet which was distributed by the ETs to all new ostomates. A generous anonymous donation covered the printing costs to include distribution to all hospitals and public libraries in the region. Gerry went on to become the chapter representative on the Queen Elizabeth II Health Sciences Center Volunteer Council to ensure that the Visitor Program retained prominent visibility. At its peak, the hospital was requesting over 200 ostomy visits annually for patients from all four Atlantic provinces. In 1997, Gerry received the Unsung Hero Award for her accomplishments.

Gerry was also active at the IWK Pediatric Hospital and in 1998, the first official ostomy visit was authorized to the IWK to support children with ostomies and their families.

Until she retired, Gerry was a Secretary at City Hall for the City of Halifax for many years. She often would say, “I’m glad now that I had my ostomy because I’ve made so many good friends that I otherwise would never have met, and I have travelled to places that I could never have imagined”. Gerry has since passed away. She would be amazed how much has changed even in the past 20 years, especially with all the new ways that technology has allowed us to reach out to people with information and support to help them “Live Life to the Fullest”.

Despite all of the information and support available, there is still widespread fear of ostomy surgery and a stigma surrounding having a stoma. Eliminating the fear and stigma will keep us busy into the future.

My personal vision for the future: OSTOMY: NO FEAR, NO STIGMA.

36 OSTOMY CANADA SUMMER 2023

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, QC and London, ON. 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 of 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) and today helps provide critical leadership in a wide range of programs and offerings (Disability Tax Credit, Visitor Program, magazine and newsletter support, ostomy youth camp, webinars, social media, connections to like-minded organizations, a robust Board of Directors to name a few). To find out more visit us at www.ostomycanada.ca Note 2.

List of Atlantic Region communities which have hosted ostomy support groups 1973 1975

1976 1977 1978 1979

1980 1982 1997 2000 2001 2017 2018 2019 2021

Nova Scotia (Halifax) Sydney, Cape Breton, NS Yarmouth, NS Berwick, NS Fredericton, NB Charlottetown, PEI Truro, NS Moncton, NB Saint John, NB Antigonish, NS New Glasgow, NS St. John’s Newfoundland; Bridgewater, NS Bathurst, NB Edmunston, NB Middleton, NS Miramichi, NB Kentville, NS Gander, NL Woodstock, NB, Cumberland, NS. Saulnierville NS Liverpool, NS, Grand Falls-Windsor, NL Humber Valley, NL

Author’s Note. Ed Tummers had his large intestine removed in 1989 and has enjoyed his artificial bowel ever since. Before that he suffered for 10 years with ulcerative colitis. He is currently a member of Ostomy Halifax which is celebrating its 50th anniversary in 2023. He is PastPresident of Ostomy Halifax, a former Director of Ostomy Canada, and currently a member of the Governance Committee of Ostomy Canada.

OSTOMY PROUD in Philadelphia HealtheVoices Conference

By Carly Allen I became an ostomate February 16, 2018 after undergoing pelvic exenteration surgery. This was a result of battling stage 3 vulvar cancer twice over four years. Before it became my forever reality, I had no idea what an ostomy was. I had no idea that an amazing and supportive community existed within my city as well as online.

Around nine months post surgery I discovered these amazing communities and quickly joined in.

I created my own platform on Instagram and then later a Facebook group, to help bring more awareness and to connect with others like me. I discovered that I was not alone and that I could bring forth more awareness and possibly make a difference by sharing my story.

Ostomate and the City is my chosen handle. I look at it as a spin off of one of my favourite TV shows, Sex and the City. A woman with her tribe and the happenings of her wild life. My version of a wild life dealing with a cancer diagnosis and a colostomy, very different from the original. I may not have the trademark Carrie curls, but instead I don my trademark colostomy bag, Winnie (the Poo). I continue to share my experiences along with some cat spam and my terrible dance moves.

As my platform and circle of online advocate friends grew, I learned about HealtheVoices. Some of my ostomy friends have been to these all expenses paid conferences over the years, which are sponsored by J&J (Johnson & Johnson). All attendees are advocates for a variety of platforms from HIV to ostomy. I was intrigued so I did some research and was blown away with what I discovered.

In order to attend this conference you need to send in a submission. I followed the submission guidelines and sent it off. The first year I was not selected but the second year I was. I was set to head to Dallas, TX for the 2020 conference. We all know what came next, COVID-19. HealtheVoices 2020 was put on hold. In 2021 it was held virtually and overall they did a great job, but my living room is not that engaging no matter what my decor. Jump forward to September 2022 and it was back on but this time in Philadelphia, PA. Five of my online ostomy pals would also be

attending. I would be the lone Canadian. I knew these people so well virtually but would we mesh in person? The answer is yes. The moment we saw one another we hugged and it just felt right. We made multiple videos and took loads of photos.

Along with meeting these amazing advocates in person for the first time, I also met other amazing advocates. I learned things about platforms I would never have known about otherwise. I was moved multiple times listening to advocates’ stories of struggle and resilience. In short, I was honoured to be in a room surrounded by strength.

Over three days I participated in small and large group discussions. On the last night there was a talent show that did not disappoint. I stayed a couple of extra days and toured the city of Philadelphia thanks due to the hop on hop off bus experience. It happened to be the end of hurricane type weather which meant rain and winds, but that didn’t stop me. I attended an Eagles game and was freezing and wet. I toured one of the oldest (now closed) penitentiaries in the US, and I also ran the steps like Rocky Balboa and got a photo with his statue.

I’m extremely grateful to have attended this conference. To say I felt empowered is an understatement. The J&J team was so engaging with us.

They sat with us, learned about us and our journeys. Each one of the team members were genuine in their approach and care. I highly recommend you follow HealtheVoices on one of their many social platforms.

As much as cancer has changed my life physically and emotionally, had I not been through it all none of this would have happened. My colostomy behaved the entire time and I never felt so grateful and proud for putting my “baggage” on social media. I hope to be one of the guest speakers at the 2023 conference so stay tuned on that! I can’t wait to see my friends again and meet some new ones too. Maybe one of those new friends will be you. n #ostomyproud Carly is a member of Vancouver Ostomy Association

SUMMER 2023 OSTOMY CANADA 37

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 Name/Nom _________________________________________________ m Corporate/Don corporative: $100.00 m Individual Patron/ Don de patron individual: $50.00

m Corporate Patron/ Don de patron corporative: $250.00

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

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

Address/adresse ______________________________________________­­­­ ____________________________________________________________ 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

301 Benlock Road RR1, Grafton ON K0K 2G0 Tel: 647-951-3940 or/ou email: info@fowc.ca

38 OSTOMY CANADA SUMMER 2023

”

Donate online at www.fowc.ca

A message from the President of FOWC

Recipients of the OSTOMY CANADA SOCIETY WOC-EP AWARD

As I travel through my journey of life, one thing becomes clear to me. That is, that no matter where you live, you have certain basic rights and one that is important to me is the rights of Ostomates. Being an ostomate myself, I cannot imagine living in a country like Kenya and not being able to afford or even get the ostomy equipment needed to enjoy one’s life.

It is for this reason that FOWC exists! As has been demonstrated many times, one person can make a difference and an organization like FOWC is no different. We make a difference!

We have concentrated on Ukraine over the past 10 years while not forgetting our commitments to countries like Kenya and others.

Last year we shipped 14 pallets (eight to Ukraine) (three to Kenya) (three to Iran) As well so far in 2023 we have sent four pallets to Ukraine and one to Kenya.

While we pay for the shipping we do not get any government funding for shipping costs to these countries. We are a self funded organization and this is why your help is needed for us to continue our work. Please take the time to fill out the donation/membership page included here and send in your contribution.

Remember your donation is used in its entirety for getting these much needed supplies to the end users! No middlemen are involved, we hire the shipper and it goes directly to our secure contact in the appointed country.

We work hard to make sure that supplies get to the neediest places!

Submitted by Ann Durkee

Lorne Aronson

As the NSWOCC conference returned to an in-person format at its 42nd National Conference in Ottawa ON May 3-7, 2023, we were thrilled to be able to award the Ostomy Canada Society’s Wound Ostomy and Continence Education Program (WOC-EP) Award to two remarkable NSWOCs. Ann Durkee, Chair of the Board of Ostomy Canada Society, was in attendance to award the certificates.

Each applicant was strong, but the two who stood out the most each demonstrated a positive impact on the ostomy community in the areas of volunteerism, program development, and fundraising, while describing impactful ways they plan to raise awareness of the impact of living with an ostomy.

The first award winner was Sonia Zegrer, an NSWOC living in Calgary, Alberta and working at the ET/NSWOC Clinic at the Foothills Hospital. There, she made an impact by helping develop a proactive pre-screening system to ensure all ostomy patients receive preoperative stoma marking and pre-operative teaching before going in for surgery.

She plans to return to working in the community after working at the clinic for three years and creating a teaching program with her work team to focus on preventing ostomy complications, especially with regards to peristomal skin breakdown and/or wounds. All in all, she wants to be proactive in making sure everyone with an ostomy can have a great quality of life post-surgery.

The second award winner was Martha Brown, an NSWOC living in Hope, British Columbia and working in a rural community with a small hospital that services the area.

As the first NSWOC with ostomy training to service the community, Martha travels 60 km away from the hospital to save so many people living with an ostomy from having to travel over an hour to get support and products. She also works with local pharmacies to help bring

Left: Ann Durkee presents the WOC-EP Award to Sonia Zegrer.

Right: WOC-EP Award recipient, Martha Brown

in products, provide samples, and to ensure that everyone living with an ostomy gets the products they need that works best for them.

She will continue to develop the ostomy program at the hospital she works at and hopes to create a local ostomy support group in the community she serves this year. She’s on a mission to create a ‘new normal’ to give assurance to people living with an ostomy by helping moderate monthly meetings to make sure their medical advice is accurate.

On behalf of Ostomy Canada Society, we want to congratulate these two deserving recipients and we look forward to seeing how they impact the ostomy community going forward! n SUMMER 2023 OSTOMY CANADA 39

My Journey with

Ehlers-Danlos Syndrome

When I was a child I knew I was different from other children.

They seemed to spend their time playing and having fun while I battled simply to get through the day. My head would feel so heavy that it was a challenge to hold it up during class. I had pain in my arms and legs, especially when exercising or playing sports or games. In spite of being very flexible I was terrible at athletics and any exertion inevitably caused me pain. My stomach always hurt and I would have severe constipation for weeks. On top of it all, I seemed terribly clumsy. I would clip doorways and counters when walking by, and trip over my own feet. This made me feel very alone and isolated. Like I wasn’t good enough or strong enough to participate.

I was seen by so many doctors over those years that I’ve completely lost track of how many I saw. First I was diagnosed with IBS (irritable bowel syndrome) and sent on my way. Then it was Crohn’s disease. Then Colitis. Fibromyalgia. Arthritis. Allergies.

Depression. Nobody had answers and my frustration grew. When I was in high school, I fell and separated my shoulder. From then on my shoulder dislocated continuously until at age 18, I had to have surgery. I also had constant and debilitating headaches. I took pain medication and antihistamines daily to try to combat them. And then there were those doctors who dismissed my symptoms entirely as ‘growing pains’ or ‘all in my head’. The most difficult part was to be gas-lighted by someone whom you turned to for help. It was very defeating. Most of the time I simply endured and kept to myself.

Even though I’m not one who likes to make a fuss, as the years passed and my symptoms got worse, I had to find some answers.

In 1994, I moved to the GTA and finally found an advocate. My new primary care physician seemed determined to discover what was causing my symptoms. He sent me to more specialists and he also attended seminars to learn more about my symptoms. As I visited one doctor after another, I was still no closer to an answer.

As the years passed I carried on, worked full time, dated and built a life. In 1997 I fell in love with and married a man who had cystic fibrosis (CF). This meant taking on a terminally ill partner along with battling my own health issues but I felt that I could handle it. There were, however, some hurdles to overcome when it came to having children. Until that time, men with CF were unable to be biological parents due to a physical malformation resulting 40 OSTOMY CANADA SUMMER 2023

by Kelly Webber

Motherhood was incredible.

The first couple of years were a complete blur. Between caring for my husband and my newborn twins, life was full. I didn’t realize at the time the toll the pregnancy had taken on my body. from the disease. An additional obstacle to conceiving was the fear of passing on the CF gene to our children. Ultimately I tested negative for the gene, so we knew that our hypothetical children would not be afflicted with their father’s disease. At this time, my health was holding relatively steady. I ate little and managed my gastro and headache symptoms with medication. I simply tolerated many of my other symptoms: Tinnitus, gum recession and bone loss, easy bruising, skin tears, light-headedness and more. All of these symptoms had just become a part of me, so moving forward with trying to have a child was an easy decision to make. We joined a research program that was at a reproductive clinic in Toronto in association with the CF Foundation. After almost two years and many ‘tries’, I was thrilled to become pregnant with two girls. Truly, I was overjoyed.

I learned when I was 18 that I was a ‘DES Daughter’. DES (Diethylstilbistrol) was a medication from 1946-1971 to, among other things, prevent miscarriage in pregnant women. It was determined that the daughters of women who took this drug had deformities in their reproductive systems which could cause fertility issues, cervical incompetence and an increased chance of getting cancer. This meant that when I finally found out that I was pregnant with twins, I had to be very careful with my body. By 20 weeks of pregnancy I was on complete bed rest. Having had to end a busy sales career was a huge mental adjustment. My entire existence became solely about bringing these baby girls to term. My health issues were not going to stop me. I spent the next 15 weeks living at my in-laws’ and doing very little other than attending weekly doctor’s appointments. I started having mild contractions shortly after my bed rest began and it was very scary. I struggled emotionally, pinging between fear for my unborn daughters and fear for myself.

Mother’s Day brunch, May 2022, with my wonderful husband, Paul.

A quiet day at home.

Sept 2022

Would I be able to carry them to full term? How was I going to manage my health, my husband and two newborn babies? Finally, at almost 35 weeks pregnant, my twin girls were born. They were very tiny but healthy. I am proud to say they were the first biological children of a cystic fibrosis male in Canada.

Motherhood was incredible. The first couple of years were a complete blur. Between caring for my husband and my newborn twins, life was full. I didn’t realize at the time the toll the pregnancy had taken on my body. I started to feel more unwell. I dropped down to 90 lbs. My bowel issues became much worse and I started to feel debilitating exhaustion, yet I would have insomnia when I tried to sleep. I developed intense ear pain. My joints started to dislocate; my shoulders, fingers, toes and hips in particular. Nausea and vomiting were becoming a regular occurrence and I would have such intense bloating that the pain would be intolerable. Before the age of seven, my daughters knew to bring me an ice pack without me even having to ask for one. In comparison to my husband’s health I felt that my issues were small and unimportant so I kept them to myself as best as I could. This was very isolating and made me feel incredibly alone.

In 2003, I developed a rectal prolapse. I sought medical care but it was put off for a year because my doctors at the time did not take me seriously. Eventually I could no longer survive without intervention. I was not able to keep food down and my colon was completely twisted and flopping back on itself. When a surgeon finally repaired the prolapse, they discovered that my sigmoid colon had stretched out to become a shocking 4.5 feet long (it is usually about eight inches). It was removed and two weeks after the repair I collapsed with a blockage. This time my surgeon removed all but six inches of my colon, which was then reattached to my rectum. The hope was that this repair would last as long as possible.

Every few months I would be in the hospital for something. One notable time, I fell after getting out of bed and couldn’t get back up. I was taken to the hospital by ambulance. An MRI showed that I tore the tiniest muscle in my butt, an injury usually only seen in elite athletes doing highly strenuous activity. I tore this muscle simply getting out of bed. Around this time, I also started needing gum grafts due to bone loss in my mouth. I have had five grafts so far and expect to need more in the future. I could count over 50 symptoms that I was suffering from at this time. Doctors were perplexed.

SUMMER 2023 OSTOMY CANADA 41

In March of 2007 my daughters lost their father due to complications following a double lung transplant. They were seven years old and I became a single parent. It was an incredibly sad and stressful time. I took nine months off from work to be available for my children while we all grieved the loss of their father. Later that same year, I had to have another abdominal surgery to repair a hernia and to remove scar tissue.

Over the years I’ve seen every specialist you can imagine: cardiologist, urologist, gastroenterologist, orthopedic doctor, rheumatologist, pain specialist, allergist and more. I’ve also tried acupuncture, physiotherapy, massage therapy, occupational therapy, chiropractics,

Out for the evening Jan. 2023

Deerhurst Resort in Oct. 2020

While I’m still on opioids to manage my pain, the addition of mmj has allowed me to function again. I no longer use a walker and only occasionally use a cane.

My scooter has been retired. I’m back to functioning in the world and even getting some enjoyment out of it; for now. hormone therapy, holistic medicine, naturopathics, cognitive behavioural therapy, and anything else I could find to improve my health.

I continued to decline and became virtually bedridden for seven and a half years, leaving the house only occasionally, using the support of my walker or scooter. I lost the ability to take part in life and watched the world go on without me. I slept a lot and tried to be useful but the pain, exhaustion, and bowel issues were all-consuming.

Thankfully, in 2009 I met an incredible man with two daughters of his own, who was willing to take on a sick woman and her amazing kids. He made sure the family functioned while I lay in bed. He became the chef, housekeeper, chauffeur, and everything else that 42 OSTOMY CANADA SUMMER 2023

our four daughters needed, allowing me to focus on my health.

Then came the worst part: the mental anguish I felt knowing that I was letting everybody down by being unable to participate in family activities or to look after my own children. The guilt seeped in and I became depressed. I felt worthless, like I had no value. I had left my career behind and suddenly I didn’t know who I was. The pain and fatigue were all-consuming and I had no energy to cope with anything else. Finally I felt like I was left with two choices: keep thinking positively, or drown in the anguish of knowing I was disappointing the people I love. Some days it was a tough choice but staying positive is a necessity for going through life with a chronic illness. I felt I had no other choice. I kept pushing forward and looking for answers as best as I could while dragging myself to one appointment after another.

Finally, in 2015 it became necessary for me to have ostomy surgery. The remainder of my colon, half my rectum and some small bowel had stretched out so much that it was causing severe pain, intense bloating, nausea, and vomiting. My gallbladder was also so full of stones that it, too, had to be removed. I was losing weight dramatically and needed lifesaving intervention once again. The diseased organs were removed and I received a permanent ileostomy. The first three months after surgery were horrible until I learned which products worked best for me. I couldn’t get the flanges to stick to my super soft skin (an EDS trait) and thus constantly had leaks. My skin turned red and raw and I remember sitting in the bathtub and sobbing. At this time, my self esteem took a major hit. Not only was I dealing with all of these symptoms but now I had a bag of poop hanging from me. I started feeling like others would be repelled by me and quickly learned how to hide my new appendage.

While at home recovering, I had an idea. I searched on Google words such as “jaw dislocation, pain, gastro” and I was brought to several websites for an illness called “Ehlers-Danlos Syndrome” (EDS), a genetic illness caused by faulty collagen. As I started to read, I broke down in tears realizing that this must be what I have!

It described my symptoms perfectly right down to my inability to get comfortable on a pillow due to neck instability.

EDS is a genetic connective tissue disorder that affects most parts of the body including skin, organs, ligaments, and tendons and results in a huge range of symptoms. It causes skin issues such as keloid scarring and increased bruising, joint laxity, which causes dislocations, and organ instability which can result in ruptures. It causes eye problems and insomnia, brain fog and poor proprioception which is awareness of your body position and movement in relation to the world around you. Due to the vast range of symptoms and due to the thinking that it is not as rare as it appears to be, makes it difficult to diagnose. My doctor immediately made an appointment for me to see a geneticist. While there is no gene yet

discovered for the most common type of EDS - Hypermobile - she diagnosed me that very day.

There are 13 types of EDS and for some the gene has been discovered. There is no cure; however, and many doctors do not understand it. Patients with EDS are looked after by several different specialists who treat the symptoms only, but it is rare to find a doctor who is knowledgeable and capable enough to treat the patient as a whole.

Following my ileostomy surgery, my symptoms started to improve. The surgeon removed the toxic organs that had been making me sick and suddenly my body started to heal. I also discovered medical marijuana (mmj) for pain management. While I’m still on opioids to manage my pain, the addition of mmj has allowed me to function again. I no longer use a walker and only occasionally use a cane. My scooter has been retired. I’m back to functioning in the world and even getting some enjoyment out of it; for now. My EDS is ever present and continues to wreak havoc on me. My bladder is now stretched out which has caused serious urinary retention and I have developed chronic kidney disease. I still get angry and frustrated but I remember how sick I used to be and I’m grateful for the recovery I’ve made. Yet I wonder how long it’s going to last.

It’s been a long journey and it is not over. Every day I battle symptoms, particularly pain and fatigue. I take, on average, 30 pills a day, including prescriptions, vitamins and supplements and I wear

a transdermal patch for pain. I use mmj five times a day and pain cream every night (at a minimum). My hands are both in braces and when needed I wear braces on my ankles, elbows, shoulders and hips. I wear two mouth guards at night to prevent further damage to my teeth. When I sleep I use a U-shaped travel pillow to prevent ear pain and jaw dislocation, I have a pillow between my knees to prevent hip dislocation and I hug a pillow to keep my chest open so that I can breathe clearly. I self-catheterize every day and use a steroid cream for my skin issues. I also use two nasal sprays to help with allergy symptoms, a common comorbidity with EDS. I rest a lot, usually scheduling only one external activity a day so that I don’t overtax myself.

In spite of there being no cure, I am grateful to finally have a diagnosis. I no longer am made to feel confused nor get belittled as though it is ‘all in my head’. Telling my story and talking with others who have EDS or an ostomy makes me feel less alone and more a part of a community that provides me with resources for solutions to whatever I am tackling. I truly believe that you must advocate for yourself to get answers. Never stop asking questions and never stop fighting. n Kelly lives in Mississauga, ON and is a member of Halton-Peel Support Group

SUMMER 2023 OSTOMY CANADA 43

OSTO MY CA N A DA

WOC-EP Nurses

IMAGE BY FREEPIK.COM

AWARD

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

Award Objectives • Promote the mission and vision of Ostomy Canada Society Inc. •P rovide an opportunity to support an understanding of the value that Ostomy Canada Society Inc. brings to people living with an ostomy and their families.

> How to Apply

Eligibility Criteria 4 Applicants have up to four (4) years from the date of completion of the Wound Ostomy and Continence Education Program (WOC-EP) to apply.

For eligibility criteria and further info see: www.ostomycanada.ca/our-awards > Deadline for submissions is March 31, 2024.<

MEDITERRANEAN DIET and the Gut by George Pick

I have been living with an ostomy for 12 years now as a result of developing Crohn’s disease in 2004. I know from experience that whenever I travel, I really need to take extra precautions with the types of food that I eat. My husband and I like to travel quite a bit, so we’ve gone to many different countries. Almost every time that we travel, I will usually experience some kind of bowel discomfort and more than likely, I will be laid up in our hotel room for a day because of something I ate (only one day if I’m lucky)!

About four years ago, my husband and I decided to take our annual trip to the Amalfi Coast in Italy and then to Athens and Santorini in Greece. Before we set off on this trip, I got my usual prep items for ‘just-in-case’ ready. This includes a supply of Imodium and a five day supply of antibiotics from my doctor in case I catch something more serious. We started our travels to the Amalfi Coast and stayed at a small, lovely city called Positano. The Amalfi Coast is on the Tyrrhenian Sea and is loaded with fresh seafood and, basically fresh everything! As we travelled and ate, ate and travelled, I noticed something amazing: not only was I not getting sick, I actually felt better hour after hour after digesting our daily meals! Some of this could be chalked up to walking a lot, the fresh air, or being relaxed on our holiday, but I could actually feel that my gut was happy! As we continued our journey to Athens and then Santorini, my health and my diet remained more than content.

Upon returning from this trip, I was eager to explore the Mediterranean diet. I had heard about it before, about how it was supposed to be the right kind of fat for your body but I was also skeptical because the diet contains a lot of oils, nuts and cheeses. So, I did a bit of digging around and found some information on the continued on page 57

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My Journey with Crohn’s Disease

Diane’s family, husband Jeremy, kids - Jonah and Melaina and dog, Penny at Port Stanley 2021

by Diane Stephenson

My journey with Crohn’s disease officially began in 2016; howevFast forward to 2015. I was pregnant with our first child - a er, unofficially, it likely began much earlier. It transformed me from boy! I had always wanted to be a mother and was ecstatic that my being a healthy 20-something with intermittent bouts of abdominal life was following the path that I had envisioned. My UC diagnosis pain, to a hospital-bedridden new mom. I had always been plagued was now a thing of fiction. However, as my pregnancy progressed, with stomach aches, episodes of diarrhea and constipation, and I began to experience intense episodes of cramping and diarrhea dizziness. There were many explanaand then came the blood in my stool. tions given for it along the way. I conMy GP shrugged it off as if I had nothThe day came when the doctors tinually improved on my own so no one ing more than hemorrhoids and asked told me what my options were. was too concerned and I laughed off if I had tried any remedy creams? My my ability to clear a dance floor with son arrived two days after my birthThe first option was to stay in the potent flatulence. day, a belated birthday gift, and he was hospital, likely for months, while In 2011 I graduated from university small and round with blue eyes, blonde treatment continued with no and entered my first role as a healthhair, and chubby cheeks. Transitioning guarantee that it would work and care provider. The learning curve and to motherhood was no small feat, as all self pressure took a toll on my physical of my time and attention was focused I would likely end up going septic. health. Eventually, I could not deny that on him. Others began to comment on The second option was that I could something was seriously wrong. In 2012, how quickly I had lost the baby weight. have my large intestine removed, I was diagnosed with ulcerative colitis I remember thinking, “if only they (UC), as I had known in the back of knew about the diarrhea that someessentially be ‘cured’, and be home my mind that I would be. I was referred times comes on so suddenly that I have within a week. I toyed with both to see a gastrointestinal (GI) specialist to run to the bathroom, with a nursing options and ultimately decided in a larger city but that appointment babe still attached to me”. Eventually, to have the total colectomy was months away. In the meantime, I when my son was six month’s old, I was became more comfortable in my new again diagnosed with UC. job, married my best friend, and we began our lives together. By the I was started on some oral medication and was sent on my way. time the appointment rolled around, my health had improved on its Within two weeks of starting treatment, my symptoms quickly own. The specialist told me that my health issues were nothing more changed. No more was I rushing to get to the bathroom. Now at than a bad virus. I was sent on my way with nothing more than a times, I had no chance of making it there at all. I remember the figurative pat on the head and no plans for any follow-up. absolute sinking feeling the first time it happened where I had zero 46 OSTOMY CANADA SUMMER 2023

control over my bowels and had an accident. that time, with the best chances of quickly takMy dad was driving me home from a docing effect. However, no improvements were tor’s appointment and it just happened. It was seen. The day came when the doctors told me humiliating and I felt like I had lost all of what my options were. The first option was to my dignity in a single moment. It was deterstay in the hospital, likely for months, while mined that I would need to start a biologic treatment continued with no guarantee that it but I would need to wait for approval from my would work and I would likely end up going insurance company to cover the $300,000 a septic. The second option was that I could year treatment. While I waited for their decihave my large intestine removed, essentially be sion, I began to rely on my family to help me ‘cured’, and be home within a week. I toyed take care of both myself, and my six-monthwith both options and ultimately decided to old baby. I started having to supplement his have the total colectomy with ostomy surgery feedings with formula as I simply did not have done; my colon was no good to me anymore Diane and Jonah at University Hospital in London, ON April 2016 (left)/ the energy to nurse; something that I had anyway. I had lost all control of my body and September 2022 (right) worked extremely hard in the beginning to be my quality of life had plummeted. There was able to do. I stopped going to my weekly baby and mom classes that nothing left to lose by taking it out.

I so enjoyed and had to remain close to home due to the constant On April 17, 2016, the estimated four hour surgery was perdiarrhea. I also ended up in my local emergency room at least once a formed; only it took seven! I woke up feeling like I had been hit by a week due to dehydration. Each time, I was given IV fluids, a talk on truck. Day after day, instead of getting closer to being discharged, I postpartum depression, and sent home. During one of these ER vissteadily declined. My mother and my baby visited daily, often times its, the doctor deemed me too ill to be sent home. Little did I know, twice daily in between nap times. We kept him entertained on my the hospital would become my home, or my ‘condo’ as my husband hospital bed with toys and a lot of snacks. My mother tried hard to eventually coined it, for the next six weeks. let me care for my son in any way I could. She would bring jars of I kept this hospital admission private and my visitors’ list even baby food for me to feed him and we would go for walks through more exclusive, as I had to be comfortable with going to the baththe hospital hallways; me pushing the stroller and my mom pushroom urgently, in front of whoever was visiting. The hospital gave ing my IV pole. I did not recognize this life I was living. At one me a couple of free rounds of Remicade; the biologic available at point, in an attempt to make me better, I had a nasal tube inserted

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that went into my stomach to remove fluid. I anniversary. Going into it, I met with doctors also had a PICC line put in my arm running to discuss ‘long-term TPN use’, as they feared to my heart, to deliver TPN as I was severely they may have to remove too much of my malnourished. I was absolutely flabbergasted small intestine. Miraculously, only one inch that I, a formerly ‘healthy’ young person, now of small intestine had to be removed. That had a bag for collecting my poop, a nasal tube, and a cantaloupe-sized abscess, which had IV for fluids and antibiotics, and a PICC line. attached to my small intestine and pinched There were also no answers for why I was not it off, explaining why I was unable to ingest improving and no discharge date in sight. I anything orally for the four weeks leading up remember one night as one of my more reguto the surgery. It was the best case scenario, a lar nurses, a young male with a good sense of miracle, and I was finally feeling better after humor and loads of compassion, came to help eight months of agony. me empty my new and overly active ostomy I returned to work the following year bag. I made a comment about how embarwith a newfound appreciation for all the little rassing and disgusting it was. He looked me moments of joy in life; a hot shower, a meal straight in the eyes and said, “it is better than shared with loves ones, pushing my baby in the alternative”. I will never forget this as it a stroller around the block, and being able to ultimately made me change my thought prowake up and go to work each day. Today, as I sit cess and to be able to see what a lifesaver this at home recovering from my third and (hopeostomy was. fully) final surgery, a proctectomy to make my My continued decline seemed to stump all ileostomy permanent, I am grateful for the the members of my care team. I was moved to new lease on life that my ostomy has given a new surgical team and new medications were me. I wasn’t sure if I would be able to have tried. My diagnosis was changed from UC to another child, seeing as how my body reacted Crohn’s disease. Eventually I was taking 24 to being pregnant the first time, coupled by pills a day, along with IV fluids and TPN. the toll the months of illness took on my body.

When they had exhausted all they could do However, with a bit of fertility help and my for me in the hospital, I was discharged after dream team keeping a watchful eye on me, I six long weeks. I was skin and bones with a now have a beautiful, feisty, three-year-old girl steroid moon face. I hated meeting new peoand my baby boy has grown into a kind and ple or acquaintances at this time as I knew funny seven-year-old. My husband and I just Top: Diane and husband Jeremy that I looked nothing like my actual self. My celebrated our ten-year wedding anniversary. (pregnant with Melaina June 2019 taken at The Mini Studio) energy remained extremely low, my nausea He took the day off to care for me post-surgery Bottom: Diane and Melaina 2021 was increasing, and what little appetite I had and we enjoyed a kid-free take-out lunch. I am at Sauble beach was decreasing. I had weekly hospital appointin the midst of applying to go back to school ments, alternating each week between seeing my new surgeon and to obtain my doctorate. my new GI specialist that he had referred me to. My new health care Despite all of the challenges of this journey, I still have fond team was like a dream. I had regular appointments and was shown memories of all the people who helped bring small rays of light genuine concern, individualized treatment and attention and I was into otherwise dark times. I had amazing nurses who had a great even given the cell number of my IBD nurse to call after hours. It impact on me, a team of doctors who looked at me like the whole was truly a client-centered approach to my health care and it made person I am; mother, daughter, wife, professional, and they worked all of the difference to me during that time. collaboratively to provide me with the best care. I had a wonderI was admitted back to the hospital on and off all summer long ful dietician and a social worker who displayed true empathy and and eventually it was determined that I would need surgery again. compassion, PSWs and cleaning staff that knew me by name and CT scans had found a piece of necrotic tissue in my abdomen, would ask about my baby and his latest milestones, hospital roomwhich was thought to be the source of my problems. First, I would mates who became friends, and friends and family who stepped up need to improve my health before I could go back into the operatto the plate through acts of kindness, big and small. I am back to ing room. A PICC line was put back in and my GI specialist fought living and thriving in life, largely due to my ostomy and the second hard for me to become one of the lucky few in the province to be chance at life it has given me, even if middle of the night leaks are able to receive TPN treatment at home. This allowed me to be with still a reality! My advice to anyone navigating health concerns is to my family while receiving my treatments. This meant so much to advocate for yourself, trust your gut, find the right team of doctors me and I am still thankful for this to this day. I had so much guilt and don’t be afraid to ask for help on the crazy rollercoaster you surrounding being absent from much of my baby’s first year of life, have been put on. n so this was a special gift.

My second surgery came, on the day of my fourth wedding Diane lives in London, ON 48 OSTOMY CANADA SUMMER 2023

JOURNEY of a VOLUNTEER

by Yaser Nadeem

Eleven years ago, when I think back to the start of my journey in Canada, the word ‘ostomy’ was not in my vocabulary. Graduating with an undergraduate degree in Electronics and Communication Engineering from Jawaharlal Nehru Technological Institute (India), I aspired to move to Canada to grow my career. Little did I know I would meet and marry the love of my life, and together we would raise our beautiful daughter.

As some may be aware, the international stuYaser, Safah and baby Yaser, Safah and baby Arwa - Sheikh Zayed Grand Arwa - Halloween 2021 dent life in Canada starts off with various obstaYaser - Ottawa, ON Mosque, Abu Dhabi, UAE Ottawa, ON cles. In 2011, acclimating to the harsh weather, the high cost of living, making ends meet with part-time jobs, and Ostomy Canada Society’s website. I was able to be guided by Peter full-time schoolwork was a road that seemed to stretch endlessly. and we made significant enhancements to the website; however, In 2013, I graduated from Centennial College with a post graduate these improvements were not enough for a national level organizadiploma in Electronics Engineering Technology, I worked my way tion such as Ostomy Canada Society. When I was recognized and into the private sector in the Technical Support field. I navigated promoted to Webmaster and Senior Technical Support, it was a through the ins and outs of work-life in Canada and as a Canadian great step up towards making changes and waves. In 2021, I got Muslim, I knew my priorities were starting to take shape. I tried to in touch with Executive Director John Hartman and Chair of the manage my professional expectations with personal goals. Two of Board Ann Durkee-MacIsaac. I took on a major project for revampmy goals were: starting a business that I could call my own and voling Ostomy Canada Society’s website and brought it on par with unteering with a non-profit organization so that I could give back to other similar national level charities. This was the same year my the community. In 2015, I started Webonative, an agency that prodaughter was born. I had tremendous support from my wife and vides website design, web development, search engine optimization, family to continue working as a volunteer. This project was comand various online marketing tools. In 2016, after getting married pleted in May of 2022 and the current website is the result of this and moving to Ottawa, I was looking for ways to focus on my other reamplification (www.ostomycanada.ca). personal goal: volunteering.

Fast forward to today: I currently handle all IT operations, webIn 2017, I finally found an opportunity when I connected with site maintenance and modifications along with running quarterly Ian MacNeil, Past President, Ottawa Ostomy Support Group and webinars, maintaining social media channels, newsletter distribucurrent Advocacy & Government Relations, Ostomy Canada tion, and any ad-hoc requests as needed. I am proud to represent Society. He was looking for a volunteer to work on improving the diversity and inclusivity in both Ottawa Ostomy Support Group Ottawa Ostomy website. I put my best foot forward and started and Ostomy Canada Society volunteers. As I continue to learn and to learn about the different types of ostomies. I learned about the grow in my career and volunteering, I am thankful to the Chair associated information related to ostomies to be able to work with of the Board Ann Durkee-MacIsaac, Executive Director John sound knowledge. I wanted to continue my path towards my goals, Hartman, Treasurer Steve Maybee and other board members and of so I strived to keep myself involved with the ostomy community. course, Ian MacNeil for giving me this opportunity to get involved Around the same time, I switched jobs and began working at a priwhere I can contribute my skill set to the world of ostomy. I am convate company called Kinaxis; an organization that is committed to fident that my skills continue to play out as an asset that is helping employee volunteerism as well as the high-tech business. However, connect individuals associated with the ostomy community around this also increased my responsibilities overall. As a volunteer, I the globe. My journey since 2015 has given me more confidence to wanted to make sure I was able to provide my feedback and input as take on other website projects with other communities as needed. I needed for not just Ottawa but also for the Ostomy Canada Society look forward to years of contribution, and to instill in my daughter website as well. I explored the Ostomy Canada Society website, and the importance of volunteering and community support. n analyzed it for areas of improvements and developments. In 2020, when COVID-19 started peaking, I connected with the former Yaser is the Webmaster for Ostomy Canada Society as well as Webmaster, Peter Folk, to get involved in a project for revamping several of its chapters and he lives with his family in Ottawa, ON. SUMMER 2023 OSTOMY CANADA 49

Finding my New Normal

by Brian Arseneau

It’s strange for me to be so public about my life. Until recently, I was always a very private person. But I’m here to tell you my story because I hope it can motivate you to live outside of your comfort zone.

My teenage years were a time of misdiagnoses and confusion.

For almost two full years, I was given the wrong diagnoses and underwent several embarrassing and invasive surgeries to correct them. I was told that I had everything from hemorrhoids to warts, and the associated and unnecessary surgeries only made things worse. I was finally diagnosed with polyps related to Crohn’s disease, but by then, the perirectal scars from the previous surgeries were irreversible and ultimately would lead me to where I am today.

As a teenager, I learned quickly to hide my condition. Even when I was in unbearable pain, I tried to keep it to myself. Perirectal Crohn’s was embarrassing. Steroid treatment helped me for a while, but due to the side effects it wasn’t a long-term solution. Over the next few years, I obsessed with special diets, natural ‘cures’ and all of the suggestions that well-intentioned friends would offer. I also experimented with just about every medication approved for Crohn’s. It was a frustrating time and a losing battle until my gastroenterologist suggested biologics. Then, finally I went into remission.

For many years, with biologic therapy I could ignore my disease and move forward with my life. And when you’re moving forward, you hopefully have more good days than bad days. So I worked hard to focus on the good days and got really good at ignoring the bad ones.

Even through all the good years, the surgical scars left perirectal strictures, (narrowing due to scar tissue), that would become a time bomb. Gradually over time, my condition worsened. I was getting used to it. I was constantly finding new ways to cope and to continue to live my life but it was a lot of work and it felt like I was drowning. Until one particularly aggressive flare landed me in the hospital, and I was unable to recover. My surgeon suggested an ostomy; I said “I would rather die.” Over the next few weeks, we had the same conversation several times. She would kindly explain that my only option was to have ostomy surgery and my response remained unchanged; I would refuse. I had an idea in my head that convinced me that having an ostomy would be worse than death.

I ended up taking increasing doses of opioids partnered with 50 OSTOMY CANADA SUMMER 2023

For many years, with biologic therapy I could ignore my disease and move forward with my life. And when you’re moving forward, you hopefully have more good days than bad days. So I worked hard to focus on the good days and got really good at ignoring the bad ones. increasing doses of stool softeners until I got to the point where the expeditious decision was to have ostomy surgery or end my life. One day, crying, I called my surgeon at 6:30 PM on a weekday. I was broken. Life was unbearable and I was finally ready to submit to having ostomy surgery. She had me go directly to the hospital where she had a room ready, and we would do the surgery in the morning.

After the surgery, I spent the next few months feeling severely depressed. I relied on opioids to keep me both physically and mentally comfortable. I was angry with myself. I felt like I had made a mistake and that my life was over. I didn’t do much during those two months except sit in my chair, sleep and binge watch anything that would keep my mind distracted. But now, looking back, I’m thankful. This low point marked with depression and anger helped me to realize that I could either continue this version of life, afraid of my ostomy, or start doing all the things I thought an ostomy

2023, Brian’s newest achievement

would prevent me from doing.

At first I was very uncomfortable. I started small, going out in the yard, walking, and returning to work. But then I started to like the feeling. I was challenging myself every day. I was doing things that were outside of my comfort zone, and I felt pretty good about myself afterward. It felt silly to get excited about little things like walks and work, but the excitement and confidence were feelings I thought I would never have again.

Gradually, that feeling of doing things that were uncomfortable became an addiction for me. Anytime I saw something that looked like a challenge, I would want to do it. I had a boat, so I started wakeboarding. In the winter, I started snowboarding and skiing again. I returned to hiking, mountain biking and scuba diving. I was smiling more. I was finding my ‘New Normal.’

Most everyone with an ostomy would rather not have it, but things happen in life, and we are dealt certain cards that make it impossible to go backwards. We are left with a choice. We can either let our ostomy define us, and hold us back from living our best life, or we can embrace it as a new part of who we are, and find ways to adapt and thrive. Having an ostomy doesn’t make us any less capable or less deserving of a fulfilling life. With the right mindset, we can overcome many of the challenges that come with having an ostomy, and we can create a meaningful and enjoyable life for ourselves. It’s all about jumping onto that cliché of finding a new normal.

A new normal is actually nothing new. It’s part of life. Life is always changing, and we are constantly being forced to adapt as our ‘normal’ is evolving. Adapting doesn’t mean simply accepting.

During difficult times, we can also choose to embrace challenges and make the best of them. We can choose to step outside of our comfort zones to try new things and to continue to grow. We can choose to be happy and live our lives to the fullest, no matter what cards we are dealt.

Ultimately, mindset plays a crucial role in how we approach our new normal. While it can be difficult at times, it’s important for us to strive to focus on the positive and find ways to lift ourselves up, rather than letting the negative bring us down. We all have the power to choose how we react to our circumstances and it’s important to remember that we’re not helpless victims, but rather very capable warriors and victors. We must allow ourselves time and patience to experiment with our routines and also with ostomy products. Each person’s journey will be unique and what works for one person may not necessarily work for another.

When you have a chronic illness it’s easy to stick to what you know, to do what feels safe and familiar. When you push yourself to try new things, to take risks, and to step outside of that comfort zone, you’ll find that there is so much more to life than you ever thought possible. Even if it’s different than how you previously pictured your life playing out. You’ll discover new strengths, new passions, and new ways of looking at the world. While it may be SUMMER 2023 OSTOMY CANADA 51

uncomfortable at first, you’ll soon realize that outside of your comfort zone is where the magic happens.

I’m not saying that living outside of your comfort zone is easy or that the benefits are immediate. They’re not. It takes a commitment but in the end, the rewards are immeasurable. I never thought that I would be someone who wakes up at 4 am to hike to an overlook in the dark to watch the sunrise, jump out of a helicopter to ski an untouched mountain peak, or to become a private pilot. By pushing myself to try new things and embracing my ostomy as a part of who I am, I’ve found a new level of strength and resilience within myself that I never knew existed.

Even as my own views on my ostomy began to change, I still struggled with the idea of other people knowing about it. I was afraid that if I told my friends or coworkers, they would treat me differently or see me as fragile. I didn’t want to be seen as someone who needed special accommodations or who couldn’t handle certain situations. I wanted to be looked at and treated just like anyone else.

It wasn’t until I started connecting with other people who also had ostomies that I began to feel more comfortable talking about it.

I joined online support groups and started attending and speaking at local support meetings. I was amazed by how open and accepting these communities were, and how willing they were to share their own experiences with me. I quickly realized that sharing my story was not only therapeutic for me, but it would also be helping others.

Now, I proudly share my journey with others. I started receiving messages from people all over the world who were going through 52 OSTOMY CANADA WINTER 2022

similar experiences and who found comfort and inspiration in my story and my active lifestyle. I’ve participated in events that raise awareness for ostomates and for Crohn’s disease. I even started an online support group for people with ostomies that encourages members to explore and push their limits.

In the end, I believe that our struggles are what make us who we are. They shape us, they challenge us, and they push us to become better versions of ourselves. While my journey with Crohn’s disease and life with my ostomy has not been easy, I wouldn’t change it for the world.I’ve come to realize that my ostomy doesn’t define me. It’s a part of me, but it doesn’t have to hold me back. In fact, it’s given me a newfound appreciation for life and has pushed me to live outside of my comfort zone. As it turns out, that’s where I’m happiest.

If you’re going through a difficult time or facing a challenge that seems impossible, I encourage you to take a step outside of your own comfort zone. Start with a baby step. It may be scary at first, but I promise you that the rewards are worth it. By pushing to try new things, you’ll discover a newfound confidence and strength within yourself that will carry you through even the toughest of times.

You are capable of great things. n Brian lives in Massachusetts, USA.

What Ulcerative Colitis Taught Me How embarrassing! There I was, 32 years old and out on one of the first dates I had in ages, and I was stuck in the bathroom of the bar. At the time I did not know that the symptoms of acute abdominal pain and frequent trips to the washroom were the first signs of ulcerative colitis. Ulcerative colitis causes the large intestine to become inflamed and to spasm and bleed whenever food passes through it. Six months after my first episode I was diagnosed. I spent the next five years cycling between being symptom free or months of trying various diets and medications in an attempt to manage the illness. The specialist overseeing my care was not particularly helpful. While he could not provide answers when I asked about causes or cures other than to tell me it was an autoimmune response, he did caution that if we did not manage to get the symptoms under control then I might need to have surgery. I got the impression that surgery was the last resort.

During those five years the illness played havoc with my life. I was a single parent with two small children, and I was completing my university degree. I had to take a leave of absence from school when the symptoms caused me to miss too many classes. Since my weight fluctuated up to 25 pounds between times of health and illness, at 5’ 3” tall and 115 lbs at my healthiest, every time I got sick I struggled to have enough energy to perform simple tasks like grocery shopping or making meals for my family. The medications prescribed during an acute attack were steroids and I worried about the long-term effects of the medications, as I read they can affect bone and muscle loss due to protein depletion. I became obsessed with self care and put myself on a strict diet avoiding all wheat, dairy, and refined sugar for years based on advice from a variety of medical experts. I also took up yoga which became an invaluable tool for managing stress when I had a flare up. It was frustrating when none of the medical treatments worked. Finally, after I had been admitted to the hospital for the second time for a blood transfusion, the attending doctor suggested that I was an excellent candidate for surgery. At first I was reluctant based on the misinformation I had received from my specialist. However, once I spoke with others who had survived the surgery and were thriving, I learned that I would be able to eat almost anything, and I would not require any medications. I had surgery to remove my large intestine on Remembrance Day 2000.

As a result of the surgery, I have an ileostomy, a surgical procedure that gave me my life back. The surgeon diverted one end of my small intestine through my abdominal wall, so I am reliant on a medical device (pouch) to gather food waste. The pouch is my faithful companion, and I am so grateful to the inventor (though online there seems to be some discrepancy about who should get the credit). I no longer have any pain associated with digesting food

by Leslie Whatmough

and am able to participate in all the activities I did before surgery.

It took me awhile to understand that I could learn some valuable lessons from my ulcerative colitis. I used to take my eating habits for granted. I didn’t think about how food made me feel. Now I notice that some foods make my nose run and others zap my energy.

I used to take my physical strength for granted. I remember being very sick and looking out the window, wondering if I would ever have the energy to go for a walk again. Now I practise yoga every day because it keeps my body strong and flexible. I also love yoga breathing exercises because I have learned how they benefit both my mind and my body. I used to multi-task, trying to squeeze as much activity into every day as possible, believing that productivity was a sign of success. When I was sick and forced to slow down, I noticed how beautiful flowers were and that my yard was a gathering place for communities of birds, bugs and stray cats, things I had never appreciated before. I used to believe I could do it all myself and that it was a sign of weakness to ask for help. I still struggle with this one, but I have learned that when I do ask for help I discover how many lovely people there are in this community. n Leslie is a member of the United Ostomy Association – Vancouver Chapter

SUMMER 2023 OSTOMY CANADA 53

Traveling with an Ostomy

by Lauren Wolfe RN, BSN, MClSc-WH, NSWOC, CWOCN

In the last few years travel has been restricted, and with the cold weather approaching, it’s an excellent time to take a break and travel. Traveling with an ostomy can be daunting, but being prepared can help you have a wonderful vacation.

Regardless of the method of travel, some common themes include: 1. Ensure you have enough supplies with you.

2. Know where to get medical attention/resources.

3. Stay hydrated.

4. Don’t wait to seek medical attention if you feel unwell.

A few years ago, I received a call from a patient who was in the USA for a few days and had run out of supplies. He had tried multiple pharmacies to no avail and, in desperation, reached out to me. Our local company rep connected with the rep in the state he was in; however, this took too much time He ended up in the ER because he had a leaking pouch and no supplies. I am sure that the ostomy pouching system was very costly!

Whether living with a colostomy, ileostomy, or urostomy, having enough supplies on hand is essential. Most people living with an ostomy have a predictable wear time. However, they may not consider everything that can affect pouch adherence when traveling: their diet changes, the weather may be warmer or colder, they may be more active than they are while at home, perhaps going swimming, or their travel plans may change due to delays. Finding ostomy supplies can be challenging. Even in Canada, not all pharmacies carry ostomy supplies; in the USA, supplies are unavailable from a local drug store.

• Electrolyte tablets/powder.

• Fillable water bottle.

• Night drainage bag (urostomy).

Traveling to different countries, especially when there is a language barrier, can be challenging if you need medical attention. Before traveling, investigate the medical system, specifically whether there are any clinics or hospitals close to where you will be staying. Having an ostomy, especially an ileostomy, can require unexpected medical intervention. Ensure that you purchase medical insurance and have that information with you, even if it’s just a day trip to the USA. Most of the time, payment is required upfront, and expenses are claimed on your return to Canada. When purchasing medical insurance, read all the fine print and investigate whether an ostomy and medical help is covered.

Hydration is a challenge for many individuals, but it is essential when travelling. As we age, we don’t get as thirsty. By the time we feel thirsty, we are already dehydrated. With a colostomy, hydration keeps your bowels moving and helps prevent constipation. With a urostomy or ileal conduit, staying hydrated keeps the urine flowing, which helps to prevent a urinary tract infection. With an ileostomy, dehydration is a severe medical condition that can lead to other medical emergencies like kidney damage.

Suggested Supplies List:

EXPERIENCES OF TRAVELING WITH AN OSTOMY Greg’s Story:

• 3x times your usual product change. For example, if changing twice a week and going away for one week, take six sets.

• Convex flange/pouching system. If you wear a flat pouching system, take a convex flange just in case.

• Precut flanges. If you cut your flanges, precut some to have on the plane which then will allow you to check your scissors.

• Skin prep spray.

• Ostomy powder.

• Imodium.

I went out for dinner in downtown Lima, Peru, on our second to last night in the country. After returning to our hostel later that night, I ran to the bathroom about once every hour to empty my bag, which was filling continuously with very watery output. It reminded me of taking the PEG prep solution before a colonoscopy in my pre-ostomy days. Later in the night, I vomited once or twice.

The next morning, despite not even drinking alcohol, I felt like I had an awful hangover. I reached for my usual hangover cures like Tylenol, water, and electrolyte tablets, but within fifteen minutes or

54 OSTOMY CANADA SUMMER 2023

Justin’s Story:

so, I would vomit it back up. I couldn’t keep down even the smallest sip of water. I tried to get some rest in the hostel but found it difficult between the throbbing headache and semi-hourly vomiting, which had turned to dry heaving by then. I figured it must have been a severe case of food poisoning or possibly Norovirus from the meal the night before.

At this point, ‘riding it out’ seemed unrealistic, and I reached out by text to my ostomy nurse, Lauren. I explained the situation, and she told me to head immediately to the nearest hospital for IV fluids to be treated for dehydration and to ask for blood tests to be run to check for possible kidney damage. By then, the gravity of the situation truly registered with me. Fortunately, this happened in a major city, and I was within walking distance of a 24-hour healthcare facility. My partner accompanied me to the hospital and paid upfront with the local currency. I was treated immediately with intravenous Gravol to help with nausea, followed by intravenous fluids with saline. They also collected blood samples. Once the Gravol kicked in, I felt better and was then able to keep down fluids orally.

In hindsight, I would have gone to the hospital much sooner and done a better job of holding on to my test records from the hospital to share with Lauren, my ostomy nurse.

While traveling in Italy, I fell ill and got what my doctors could only infer must have been a GI (gastrointestinal) bug. I had just finished attending a conference and dismissed the symptoms as fatigue. I became severely dehydrated. My trip ended abruptly in order for me to get home. Once home, I was kept in the hospital for several days until my blood work, particularly my kidney function, stabilized.

Upon reflection, my first symptom was frequently emptying my bag that filled with watery output throughout the night. That was followed by fatigue and headaches. During the day, I had pushed myself to walk around town and it was very in hot weather. I did not know I was already dehydrated. I thought I was keeping myself hydrated by drinking Gatorade, which only led to higher output. Gatorade has additional sugar so unless one is drinking G2 Gatorade sugar increases output.

Over the next 24 hours, my symptoms worsened: leg cramps, headaches, and brain fog. I felt ill and dizzy. I tried to get my body to absorb more fluid by drinking small amounts and licking table salt. I reached out to my NSWOC, who advised me to go to the ER in Italy. Not being able to speak Italian was a barrier to me receiving appropriate care. The fact that I threw up from car sickness upon arrival caused the staff to underestimate the severity of my condition. They gave me two liters of IV fluids and sent me on my way. Having had some hydration did make me feel better but in hindsight it wasn’t enough.

My wife and I attempted to continue our vacation, but by the time we arrived at our next location, the cramping in my legs had returned and was getting worse. We decided it would be best to go home ASAP, where the doctors know my medical history. At the time I was not aware of Imodium, but on the other hand, under the prevailing theory of a GI bug, Imodium is not recommended.

Our journey home was difficult, enduring connecting flights and then me collapsing before boarding, and my wife needing to push me in a wheelchair. I was lucky they let me on the plane! A banana smoothie helped slow things down somewhat and made me feel a little better. I kept in touch with my NSWOC at each layover; however, my brain fog prevented me from providing accurate information. She had no idea that I had collapsed at the airport. I was determined to return to a medical system that knew my history.

In hindsight, the primary things I would change are:

1. To have acted earlier and not dismissed the sudden change in the frequency of emptying my pouch.

2. To have asked for a copy of my medical records in Italy, including bloodwork.

3. To have taken a rehydration kit, which includes a large water bottle and electrolyte tablets that you can drink slowly throughout the day to maintain hydration, particularly on hot days.

SUMMER 2023 OSTOMY CANADA 55

TAKE HOME MESSAGE

Signs of Urinary infection:

Greg and Justin waited too long to seek medical attention. Greg was fortunate not to have ongoing medical concerns, and Justin spent days in a Canadian hospital while his kidneys recovered from the trauma experienced due to his dehydration.

The consequences could have been even more dire if Greg and Justin had not reached out to their stoma nurse. Neither of them thought they needed to go to the ER.

• Cloudy urine • Odorous/strong-smelling urine • Lower back pain/abdominal pain • Fever • Loss of appetite

Signs of Dehydration:

• Feeling tired, dizzy, lightheaded, faint.

• Urine is darker than a pale yellow post-it note.

• Increased thirst, dry mouth, dry skin, and shortness of breath.

• Headache.

• Loss of appetite, stomach cramps, nausea, and/or vomiting.

• Muscle weakness/cramps, shortness of breath, decreased sensation in arms and legs.

• High volumes of very liquid ostomy output.

Tips to Stay Hydrated:

• Carry an insulated water bottle and drink the water.

Take a reusable bottle with you because water can be costly in Europe.

• Add electrolytes to your water to help with water absorption.

• Try to have a snack or salty cracker when drinking anything, e.g., pretzels.

• Drink slowly; sipping on liquids throughout the day is better than gulping.

• Check if you are feeling fatigued; it may be due to dehydration.

• Drink more water with electrolytes when consuming alcohol.

• Check your urine output; if it’s dark, you need to drink more.

• Take 2 mg of Imodium half an hour before meals if output is very liquid and unusually high volume.

• Eat foods like cream of wheat, peanut butter, and marshmallows to thicken output.

Signs of Blockage:

1. Partial Obstruction • Pain • Nausea • Stoma swelling • Liquid thin output • Output is more odorous

2. Complete Blockage • Pain • Stoma swelling • Vomiting with no output

How soon is too soon to seek medical attention? Are you worried about the cost, or have you convinced yourself that the symptoms will resolve? As you can see from both these stories, dehydration comes on quickly, and delays in seeking medical attention can lead to worsening medical conditions. When experiencing symptoms related to dehydration, urinary infection, or blockages, immediately seeking medical attention is recommended.

TRAVELING BY AIRPLANE

• Ostomy supplies are permitted in carry-on and checked baggage.

Medical supplies, equipment, and mobility aids can be brought in addition to the two carry-on bag limits.

• You are not required to bring documentation to support your medical needs or condition, but it can facilitate the screening process.

• Prescription and essential non-prescription medications are exempted from the 100 mL or 100 g (3.4 oz) limit. These items should be appropriately labeled with the manufacturer’s name or pharmaceutical label identifying the medication.

• Ostomy paste tubes must comply with the liquids, aerosols, and gels regulations (100 mL or less) and be placed in a clear 1 L plastic bag.

• Pack scissors with blades more than 6 cm from the joint to the tip in your checked baggage.

• We recommend cutting your flanges before your trip, in case you need them on board the plane.

•A rrive well in advance of your flight.

• You are encouraged to advise the screening officer of your medical condition before the screening process begins.

At Pre-Boarding Screening:

• A physical search may be required if you trigger the alarm at the walk-through metal detector or if you are randomly selected. You can request a screening in a private search room.

• Many airports now have full-body scanners. Advise the screening officer that you have an ostomy.

• A screening officer of the same sex can be requested to be present for a private search.

• Screening officers are trained to be courteous, sensitive, and respectful of your situation. However, in different countries, screening officers may not understand what an ostomy is For more information, please visit the Canadian Air Transport Security Authority (CATSA) website at: catsa-acsta.gc.ca or call 1-888-294-2202. n Lauren is a member of Ostomy Canada Society's Medical Lifestyle Advisory Team

56 OSTOMY CANADA SUMMER 2023

continued from page 45 Crohn’s Colitis of Canada website. Dr. Gibson, who is a researcher and Associate Professor of Biology at UBC has been trying to uncover how different diets affect the symptoms of irritable bowel disease. According to her, Western diets, which are high in omega-6 fats are a key contributing factor for causing flare-ups. This would seem at odds with the Mediterranean diet, but Dr. Gibson points out that the types of fats in this particular diet support protective inflammation, meaning they do not contribute to flare-ups. The issue of fat in our diets is hugely important according to Crohn’s Colitis of Canada, because what we eat can literally provide crucial flare-up management and even prevention.

Most people will know of some basic Mediterranean food, such as hummus, moussaka, spanakopita, tzatziki, and many other great dishes. What Crohn’s Colitis of Canada has recommended is to include the following: fruits and vegetables, nuts, seeds, legumes, potatoes and whole grains, as well as fish, seafood and healthy fats. Poultry, eggs, cheese and yogurt are good in moderation and even moderate amounts of red wine, coffee and tea are acceptable. What should be excluded, or moderated considerably are: red meat, sugars (especially refined sugar: granulated sugar) (use honey or maple syrup as a replacement), processed foods and refined grains. By far the biggest player in the Mediterranean diet is olive oil, olive oil, and more olive oil. Cook with it, blend with it, spread it on salads… even bake with it!

Olive oil provides monounsaturated fat, which lowers total cholesterol and low-density lipoprotein (or “bad”) cholesterol lev-

els. Nuts and seeds also contain monounsaturated fat. Fatty fish, such as mackerel, herring, sardines, albacore tuna and salmon, are rich in omega-3 fatty acids. These polyunsaturated fats help fight inflammation in the body. These fatty fishes are exactly the types of food I was eating while on vacation! Omega-3 fatty acids also help decrease triglycerides, reduce blood clotting, and lower the risk of stroke and heart failure.

Knowing all of this information, and thinking of how well I felt and how well my gut felt, I had to wonder what it would be like if I remained living in Greece for another year? After being there for only three weeks, and feeling as good as I did, I personally have to give credit to this amazing, healthy diet! While on this trip, I ate mainly fresh fish, fresh veggies and pasta and nothing in the way of heavy sauces or overly super-rich food. A simple grilled fish with lemon, chopped tomatoes and fresh Mediterranean herbs became a joy to eat and my gut seemed to be thanking me for it! Hopefully, this diet might help other ostomates too but as always, it is best to consult with your doctor or dietician before embarking on any kind of new diet.

Personally, I still stayed away from nuts and grains as I know that they will irritate my gut. Nonetheless, I felt that I was blessed by taking this trip. I had no idea that my gut would be totally immersed into the Mediterranean diet and it made me aware of it’s amazing potentials. n George is the Treasurer of the United Ostomy Association Vancouver

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Accommodations for Ostomates

At Van Duzen Botanical Gardens

I don’t consider myself disabled. I am fortunate that the health concerns related to my ostomy surgery are no longer an issue and I am not restricted from any activities that I enjoy. However, because I have an ostomy I realize that I face challenges that those who know little about ostomies have never considered. If you have an ostomy you know what I mean.

I find it challenging to find jeans that fit in the butt and give me enough room around the front to allow for my expanding pouch. Call me vain, but I don’t think it’s unreasonable to want to look and feel good in my clothes. It took me over a year (and many failed purchases) to find just the right pair of jeans. However, in the scope of life this is only a minor inconvenience. What is far more distressing is not being able to find a suitable public washroom in order to change an unexpected leaky pouch.

On a recent outing to a historic site, I suddenly had that familiar warning sign. A slight itchiness and a sense of pressure from the area around my stoma. I excused myself and headed to the closest accessible washroom. I use the term ‘accessible’ loosely, because from my perspective the stall designed to accommodate a wheelchair was ill equipped for my needs. If you are an ostomate you know that a hip height flat surface close to clean running water is the best layout for changing your pouch. Most public washrooms do not have any flat surfaces in their stalls. For efficiency it seems, designers have 58 OSTOMY CANADA SUMMER 2023

by Leslie Whatmough

removed toilet seats’ covers, water tanks and the toilet paper dispensers are too narrow or curved to count as a surface. A baby change table would be a good alternative, but those are rare too and often are out in the open in a washroom. Don’t even get me started on the inaccessibility of airplane washrooms! So what choice do we have?

Consider the statistics, “ It is estimated that over 130,000 people in Canada have an ostomy.” If every ostomate can anticipate needing to change their appliance in a public washroom only five times in their lives that would be a minimum of 650,000 times that a suitable space would need to be found. I have based this average on the number of times that I have had to change my appliance in these conditions in the more than 20 years that I have had my ostomy. The majority of those times I needed to use the accessible washroom at work, but thankfully that was a full washroom. I did work at a facility that only had an accessible stall in a public washroom and it caused me to worry, but I have been very fortunate that I rarely have unexpected leakages. I also know that my experience is unusual. There are ostomates who regularly have to deal with appliances that do not adhere properly, and my heart goes out to all of you! I think you are so brave to continue to live your lives fully in spite of the worry that must accompany you everywhere you go! It is not unreasonable to ask, “Will I be able to resolve my issues with dignity?”

Canadians are a polite bunch. We do not discuss bathroom issues openly and I believe the stigma that accompanies life with a pouch is part of the reason that this issue has not been brought to light. I do not want to be a victim of my circumstances; I would prefer to find a solution that ensures that others like me can feel comfortable while out in public. I have not written about my ostomy before, perhaps I was in denial or not wanting to ‘expose’ my personal issues. I realize I cannot be silent any longer if I want to see change. I will advocate for consideration in public planning meetings. I will write to my local politicians to talk about having an ‘invisible disability’ and the considerations that could be made. A small shelf in an accessible washroom is, at the very least, a short-term solution. I invite you to consider how you could speak up for yourself and take the power for change into your own hands. n Leslie is a member of the United Ostomy Association – Vancouver Chapter

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