Question:
So glad to have found your website! I hope this gets to you through email; I couldn’t get it to send through the website In the next year or less I will be having Ostomy surgery. I suffer from severe Crohn’s in my small intestine as well as rectal & perianal fistulas. This will be my second time with an Ostomy the first colostomy surgery was in the late nineties and it was reversed within a year. Living with an Ostomy was a very bad experience for me. So although I have an idea of what to expect I am very anxious (terrified actually) of the whole situation. I am wondering if there has been any improvements to the appliances or system to improve the experience. I will be having an ileostomy and have been told this is even harder to live with than a colostomy. Things like dehydration, nutrient absorption. liquid and solid out put. I have little to no information and I’m hoping you can help. Don’t know what to expect etc. Any information you can send to me will be helpful.
Response:
The issues that arise are different for all. Some have no issues with either a colostomy or ileostomy while others have issues with either ostomy. It all depends on the outcome of placement, surgery and complications. There are many supports in place. It is difficult to say what type of pouching system set up you might need after surgery.
Suggestions:
1. It is strongly suggested that you ask for a NSWOC nurse (formerly called an ET nurse). They may be in the hospital or arranged through home care. NSWOC ( Nurses specialized in Wound, Ostomy and Continence) nurses look after people who had had ostomy surgery, help to choose an appropriate pouching system, suggest ways to prevent dehydration, and to thicken output if liquid. Another resource to find an NSWOC in your area is “ Find an NSWOC” https://www.ostomycanada.ca/find-a-nswoc2. Contact the Ostomy Canada Visitor Program https://www.ostomycanada.ca/support/visiting-program/
3. Attend a local Ostomy group. https://www.ostomycanada.ca/connected/
4. Ostomy Canada also has a Medical Lifestyle Advisory Team who will answer your general questions. https://www.ostomycanada.ca/medical-lifestyle-advisory-committee-questions/.
5. And don’t forget to check out Ostomy Canada’s very active Facebook Group too. https://www.facebook.com/OstomyCanada/.
6. Your NSWOC can give you diet and nutrient absorption information along with the dietitian at the hospital. Many provinces have a Dial a Dietitian service. For example, in BC just dial 811. See this link for more information: https://www.811healthline.ca/dial-a-dietitian/
We hope this information is helpful and we wish you all the best for your upcoming surgery. Remember we are here to help anytime as you heal, get heathy, and start to live life fully with your ostomy.
Karen Bruton RN BScN MCISc-WH WOCC(C)
Nurse Education Consultant – FNIB
Indigenous Services Canada, Government of Canada