United Ostomy Associations of America
  • HOME
  • OSTOMY INFORMATION
    • Ostomy Information
      • What Is An Ostomy?
      • Living with an Ostomy: FAQs
      • Diet + Nutrition
      • Ostomy Skin Care
      • Sexuality
      • Bill Of Rights
      • New Ostomy Patient Guide
    • My Ostomy
      • Ileostomy
      • Colostomy
      • Urostomy
      • J-Pouch
      • Continent Diversions + Other Ostomy Types
      • Temporary Ostomy
      • Short Bowel Syndrome
      • Español
    • Children to Young Adults with Ostomies
      • Infant/Toddler (0-3 Years)
      • Preschool (3-5 Years)
      • Elementary School (6-9 Years)
      • Pre-Adolescent (10-13 Years)
      • Adolescent (14-18 Years)
      • Young Adult (18-25 Years)
      • Parents & Clinicians Resources
      • Know Your Rights
      • What To Expect After Surgery
      • Odor Control
      • Fast Facts
      • Ostomy Game
    • Crohn’s Disease & Ulcerative Colitis Information
      • Defining, Caring and Treating
      • Preparing for Ostomy Surgery
      • Common Issues, Managing Diet, Mental Health
      • Intimacy, Fertility and Pregnancy
      • Resources
    • General Information
      • UOAA Ostomy Marketplace
      • Product + Supply Information
      • UOAA Resources Library
      • Resources for Nurses/Home Health
      • Travel Tips + TSA
      • Donate Your Ostomy Supplies
      • Emergency Supplies
      • Related Links
      • UOAA Virtual Ostomy Clinic
      • Outpatient Ostomy Services Locator
  • SUPPORT
      • discussion
        Ostomy 101:
        Easily communicate “What is an ostomy?" with our infographic.

        Read More

    • Find Support
      • Support Group Finder
      • Support Group Websites
      • UOAA Virtual Ostomy Clinic
      • Online Peer and Ostomy Support Programs
      • Outpatient Ostomy Services Locator
      • Find a Mental Health Provider
      • Find an Ostomy Nurse
      • Online Discussion Board
      • Apps for Ostomates
      • Emotional Concerns
    • Connect With Us
      • Start/Affiliate Your Group With UOAA
      • Resources For ASGs
      • National Membership
      • Sign Up for Our E-Newsletter
    • Participate
      • Attend An Event
      • Become An Advocate
      • Join Us for a Conference
      • Make A Donation
      • Become a Member of The Phoenix Society
      • Donate Your Ostomy Supplies
      • Take A Survey
  • ADVOCACY
      • portal
        Roadmap to Establishing Outpatient Ostomy Services
        Documents that are available as PDFs to download and print.

        Read More

    • About
      • Advocacy Program
      • Advocacy Priorities
      • 10 Questions to Help You Speak Up and Self-Advocate
    • Get Involved
      • Understanding the Medicare Competitive Bidding Program 2025 Ruling
      • Take Action
      • Join Advocacy Network
      • How to Be An Ostomy Champion
      • Ostomy Awareness Day
      • Roadmap to Establishing Outpatient Ostomy Services
    • Tools and Resources Library
      • Non-Medical Switching Resources
      • Ostomy and Continent Diversion Patient Bill of Rights
      • Restroom Access Self-Advocacy Tools
      • Travel Tips + TSA Communication Card
      • Swimming with an Ostomy
      • Mythbusters Infographic
      • Workplace Resources
      • Aging with an Ostomy or CD
    • Take Control of your Healthcare
      • UOAA Virtual Ostomy Clinic
      • Know Your Ostomy Checklist
      • Know Your Ostomy Supplies Checklist
      • Physician Visit Checklist
      • Know Your Health Care Insurance
      • Know Your Pouching System
      • Know What’s in Your Medical Record
  • WHO WE ARE
      • Have a Question for Us?
        UOAA is a 501(c)(3) nonprofit organization that supports, empowers, and advocates for people who have had or who will have ostomy or continent diversion surgery.

        Contact Us

    • About Us
      • Our Mission + History
      • Our Leaders
      • National Sponsors + Partners
      • National Membership
      • Contact Us
    • How We Help
      • Advocacy
      • Awareness
      • Support
      • National Conference
      • Ostomy Nurse Scholarship
    • Get Involved
      • Volunteer
      • Become A Leader
      • Join A Committee
      • Career Opportunities
      • Sign Up for Our E-Newsletter
  • LATEST
  • EVENTS
    • Ostomy Awareness Day
    • Run For Resilience 5K
    • Ostomy Academy
    • Educational Webinars
    • 2025 National Conference
    • Calendar
  • GIVE NOW
  • SEARCH
  • Menu Menu

Your Ostomy is Just the Beginning

Digital Sponsor, Emotional Health, IBD, Ileostomy

By Makeda Armorer-Wade

How many times have you thought “why me?” Well I get it.

An Ostomy is not an elective surgery. Most people who get one are having challenges with a health condition, or an accident that will require them to get one. I got my first Ostomy after a four-decade battle with Crohn’s disease. I remember that day like it was yesterday. I can’t remember which bowel resection I was up to. But I know that something had gone dreadfully wrong. I had the surgery and had just moved from step-down (one step below ICU, where you are kept until you become stable), to a regular room. 24 hours into that room assignment something inside began to rupture. That night I contacted my doctor who scheduled me for an intrusive test five hours later. I was in too much pain to tolerate the test, at which time they realized that I would have to have an emergency ileostomy. I was in the loneliest place in the world. I had just had a seven-and-a-half-hour surgery and I had to go back in. I did not know how my body would be able to handle it.

My family who had come to the hospital in the wee hours of the morning, were told once again, that emergency surgery would have to be done in order to save my life. Nobody was prepared for the news of an ileostomy. (An ileostomy is when they divert your intestine from the inside to the outside of your body, usually at the lower end of the small intestine called the ileum.) Neither myself or my family knew what this was, and while they explained it to me I began to ask what other options we had. Of course, the answer was “none if you want to live”. I responded the way that I always do with “ok, let’s just get this done”. I didn’t have time to express fear. Because, I saw the look on my family’s face as they began to draw on my belly in the elevator to determine the site of the surgery. I was scared, angry and worried because I had no control, so I prayed.

My ileostomy taught me a lot about life and stamina. I became even more determined to learn everything I could to make this a smooth transition.

After the surgery I had my consultation with my WOC nurse and began my new journey. She was pretty amazing in how she explained everything and made sure that I understood the mechanics of taking care of my Ostomy. It was a daunting task. It was one of the longest days of my life and a big blur. My family was super supportive as I was so weak. But they didn’t have a clue what to do. They were ready to take direction from me. And while I have managed to keep a stiff upper lip through the first 14 lifesaving surgical procedures, this was different. I was grieving. I knew I had to figure it out, and my only consolation was that eventually it would be reversed (this is called a take-down). Well, I can probably tell you about that in another blog.

My ileostomy taught me a lot about life and stamina. I became even more determined to learn everything I could to make this a smooth transition. After learning to walk 10 steps from death’s door, over the course of 18 different surgeries, I eventually learned to work my P.L.A.N.© and you can too.

P.L.A.N.© stands for Prepare, Let go of Shame, Ask for help, Never Give up!

I tell my clients all the time that “life will teach you some things; that which you want to learn and that which you don’t.” In life we don’t always get to pick our lessons, but I am so happy that I learned a ton of them here. It allowed me to come to the conclusion that my fellow Crohn’s Warriors and Ostomate brothers and sisters needed the same support that I did after surgery. And so I am here. I am not a doctor or a nurse, just someone who cares about you. I wrote books and created a learning platform ThePossibilitiesLifestyle, to support your experience with the books and provide The Possibilities Lifestyle Coaching. My goal is to help and support as many people as I can. Please, I want you to remember this.

 

Editor’s note: This educational article is from one of our digital sponsors, ConvaTec. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

Related

June 22, 2021
Tags: ConvaTec, Crohn’s disease, new ostomy patient, patient story
Share this entry
  • Share on Facebook
  • Share on X
  • Share on WhatsApp
  • Share on Pinterest
  • Share on LinkedIn
  • Share on Tumblr
  • Share on Vk
  • Share on Reddit
  • Share by Mail
https://www.ostomy.org/wp-content/uploads/2021/06/words-of-inspiration-at-woodycrest-e1624387232471.jpg 1218 2235 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2021-06-22 14:41:482021-06-22 14:41:48Your Ostomy is Just the Beginning
You might also like
Bruce’s Ostomy Journey with Moldable Technology
Caring for an Ostomate with Memory Loss
coronavirus and ostomy bags Coronavirus is Not Affecting Ostomy Supply Production
Tricia Hottenstein’s Story
Annie Gammell’s Story
Common ostomy myths Ostomy Myths vs Reality
2 replies
  1. Suzana Renee
    Suzana Renee says:
    June 24, 2021 at 4:15 pm

    I was born with an oomphalocele birth defect in 1967. Several abdominal surgeries before I was age 2 incl a gastronomy tube. Crohns age 16. Several more bowel resections. Ileostomy in 2016. Only sigmoid to rectum still inside but not attached. Barbie butt surgery eventually. But it’s fine and I’m more than okay with it because the Ostomy bag has kept my Crohns at bay for 5 years now this May! So I can climb rock walls, run 5k obstacle course runs, paddle board, and currently I’m competing in a fitness magazine Cover competition in the hopes that a mom who’s 53 with a lifetime of health issues she’s overcome incl dehydration a chest port and neurological conditions can grace their pages to show that fitness comes in all shapes and sizes. To me it’s the heart of the fight. Some days suck and I’m weak or tired. But when I feel great I give it my all. I teach my kids to never give up. Always go after what you dream. Persevere be strong. This illness is a struggle but we’re warrior strong ?? and with determination prayer and support I move forward every day! FB Zanazen Ostomy-fitness @fitnessostomy to see more and https://mshealthandfitness.com/2021/zanazen

Comments are closed.

Our Categories

Advocacy (78) Caregivers (19) Colorectal Cancer (19) Colostomy (138) Continent Diversions (8) Digital Sponsor (77) Disaster Preparation (4) Emotional Health (61) Events (32) Exercise/Sports (47) Fashion/Clothing (11) Healthcare (21) IBD (52) Ileostomy (181) J-Pouch (7) jejunostomy (7) Membership (3) Nutrition (19) Ostomy 5k (19) Ostomy 5k (15) Ostomy Awareness (55) Ostomy Basics (55) Ostomy News (94) Ostomy Nurse (13) ostomy reversals (12) Ostomy Supplies (2) Ostomy Tips (93) Ostomy Videos (4) Patient Stories (96) Pediatric Ostomy (4) Personal (63) Research (3) Sexuality (12) Short Bowel Syndrome (16) Skin Care (9) Social Life (5) Support Group News (12) Support Resources (15) Teens (3) Travel (11) UOAA Conference (17) UOAA History (3) UOAA Volunteers (3) Urostomy (111) Young Adult (7)

Support Us:

Your Donation Funds UOAA Educational Programs:

DONATE TODAY
SUSTAINING GIFT
BECOME A MEMBER
UOAA E-NEWS SIGN UP
Get updates on events, national advocacy and important topics in the ostomy and continent diversion community.

Contact Us


United Ostomy Associations of America
P.O. Box 2293
Biddeford, ME 04005-2293

Virtual Ostomy Clinic

Contact UOAA

Donate Your Supplies

Call us toll-free at: 1-800-826-0826.
Our Information Line hours are Monday-Friday, 9am to 3pm EST. If you have an emergency, please dial 911 or contact your local medical professional.

Please understand that UOAA is a private, nonprofit, advocacy and informational organization. We are not a medical facility and we do not have medical or legal professionals on staff. Therefore, UOAA does not provide Medical, Mental Health, Insurance or Legal Advice. Visit UOAA Virtual Ostomy Clinic provided by The Wound Company for non-emergency, virtual ostomy support.

Privacy Policy

Get Involved

UOAA is the leading organization proactively advocating on behalf of the ostomy community. Recognizing that we are always stronger together, we encourage everyone to get involved by joining our Advocacy Network. We’ve also created several Advocacy Tools and Resources to help you successfully advocate on behalf of the ostomy community to ensure every ostomate receives quality care.

UOAA Run for Resilience Logo

UOAA does not and shall not discriminate on the basis of race, color, religion (creed), gender, gender expression, age, national origin (ancestry), disability, marital status, sexual orientation, or military status, in any of its activities or operations.

Digital Health Award
© 2005-2026, UOAA. All Rights Reserved l Design by Tap House Media
  • Link to Facebook
  • Link to X
  • Link to Pinterest
  • Link to LinkedIn
  • Link to Youtube
  • Link to Mail
  • Link to Instagram
Link to: Ashley and Mariah’s Story: A Young Daughter Inspires her Mom to Break Down Walls When Advocating for Short Bowel Syndrome Care Link to: Ashley and Mariah’s Story: A Young Daughter Inspires her Mom to Break Down Walls When Advocating for Short Bowel Syndrome Care Ashley and Mariah’s Story: A Young Daughter Inspires her Mom to Break Down... Link to: Fashion with an Ostomy Link to: Fashion with an Ostomy Fashion with an Ostomy
Scroll to top Scroll to top Scroll to top