Question
Hi, I’m a new ileostomy patient (5 weeks post-op) with a retracted stoma and a very foreign (non-English) OHIP stoma nurse whom I don’t understand. I’m struggling with leaks and damaged skin and changing bags four times a day. I see the nurse every two weeks and she changes the bag for me, which sometimes lasts 2 days instead of 2 hours. My skin is an absolute mess and I’m in a lot of pain, but nobody seems to know what to do. The emergency dept isn’t interested – they just put on a new bag and sent me home – the stoma suppliers just send me samples, but no advice on how to heal my skin or what to do to prevent leaks, and my surgeon says “deal with it, it’s only for a few months.” The problem is I am absolutely raw and bleeding and unable to leave the house. Where can I find a stoma specialist to consult privately (I’m happy to pay) who can help me figure this out?
Please, I’m desperate for some help. I found you online and I really hope, hope you can point me in the right direction.
Response
Ongoing leakage and injured skin should not be a part of the ostomy experience, neither the expected lifestyle.
The following information will assist you in finding a Nurse specialized in Wound, Ostomy, and Continence, (NSWOC) in your area, I also highly recommend that you also connect with an Ostomy Support Group in your area.
To find an NSWOC (Nurses Specialized in Wound, Ostomy and Continence), in your area.
- Go to Ostomy Canada Society official website – https://www.ostomycanada.ca/
- When on the webpage look for “Support Links” (box on right side of webpage) – click on this.
- Scroll down and look for heading “Find a NSWOC (a website where you can find a nurse specialized in wound ostomy, and continence in Canada) – click on this
- Follow the instructions to locate NSWOC nurse(s) in your area.
When you have a consultation, the NSWOC nurse will examine you to determine the cause of your skin issue and then will provide you with assistance and professional recommendations such as; skin prep products, etc.
I highly recommend that you connect with people with ostomies in your area. New and seasoned people with ostomies find value in connection with one another. There are many Ostomy Support Groups across Canada. Ostomy Canada Society chapters, satellites, and peer support groups have been organized, and are meant to provide an opportunity for persons who have had or may have ostomy surgery and their families, partners, caregivers, and friends to meet, provide support and understanding and share information. Local Ostomy Support groups are your best resource for peer support and for assistance in locating a supplier for your ostomy equipment and products in or near your location, for example. Ostomy Chapters often invite a health care professional, such as a nurse who is specialized in ostomy care, a physician, pharmacist, or dietician to speak at the chapter meeting. There may also be a presentation from a representative of one of the manufacturers or suppliers of ostomy products.
To find a Support Group near you go to:
https://www.ostomycanada.ca/support/groups/
Instructions:
- Scroll down page find “OSTOMY SUPPORT”, (middle blue box)
- Click on this
- Follow Instructions
The information on this page will direct you to the Chapter and Support Group details throughout Canada. Look for the information details that will direct you to your Province, click, and then a more detailed list and the map will pop up. You will then be able to identify and contact the Chapter/Support closest to your home location.
Your local Support Group members will be pleased to assist you, and we all wish you a speedy recovery.
Jo-Ann L. Tremblay
THE OSTOMY FACTOR Blog – joannltremblay.wordpress.com
FACEBOOK – Author Jo-Ann L. Tremblay
TWITTER @joanntremblay
Author of “The Self-Coaching Toolbox” , “Better With A Bag Than In A Bag” , “Another BAG Another DAY”, “BAGs Around the World”, Why Buttercup Wears a BAG!”, “The Sibs Gang Cave of the Golden Heart”
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Member OstomyCanada /Medical Lifestyle Advisory Committee Member- Ostomy Lifestyle Expert
https://ostomycanada.ca
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Website: jo-annltremblay.com
Our friends over at Nurses Specialized In Wound, Ostomy And Continence Canada (formerly called The Canadian Association for Enterostomal Therapy (CAET)) have renamed their handy look-up page on their website. It was formerly called “Find An ET Nurse” and is now called “Find a NSWOC“. Click on the image to the left or link here to go to their site.