Right now I have an ileal anal pouch. At some point, the reality is that due to an anal stricture I will need an ileostomy. Up until this point I have been able to deal with this inevitability but as time goes by I find I am getting more and more anxious. Any advice would be greatly appreciated as I am having a really hard time with this.
Thank you for your question and concern. There are many people in the same boat as you.
I will list and describe some resources which are available to you.
A good place to start would be to attend an Ostomy Canada meeting.
Ostomy Canada has chapters and peer face to face support groups across Canada. Here is the link to find a group close to you. https://www.ostomycanada.ca/support/groups/
If there is not a group close for you to attend, please call the closest group and most have trained visitors who have gone through a similar situation and can give you support by phone or email.
Ostomy Canada has a very active and supportive Facebook page. You can pose your question there and you may get responses from people across Canada. https://www.facebook.com/OstomyCanada/
Another resource would be to contact your closest NSWOC ( Nurses Specializing in Wound, Ostomy, and Continence). To find a NSWOC nurse please see this link: https://memberscaet.ca/find.phtml
I am wondering if you would take some quiet time to reflect on; what about having an ileostomy is causing anxious feelings. Is it the surgery itself? Is it having a pouch permanently on your tummy? If you can identify the source of the anxious feelings, then it may be easier to problem-solve or sometimes even just talking about what is causing those feelings are helpful.
Another helpful exercise is to take a piece of paper with 2 columns, one column labeled good things or benefits about having an ileostomy and the other column labeled uncomfortable things about having an ileostomy, which is looking at the pros and cons. Sometimes we need a reminder that we are choosing to have an ileostomy to improve our life. You will develop a new “normal” life with an ileostomy just like you developed a new” normal” when you had the ileoanal pouch. Everything you have gone through already shows you are very resilient!
I hope these suggestions are helpful. Wishing you all the best.
RN, BSN, NSWOC, NCA
All-round nice person, now retired 😉
Our friends over at Nurses Specialized In Wound, Ostomy And Continence Canada [NSWOCC] (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.