• Living with an ileostomy

    Asked by CarolLHRN on Monday, October 17, 2011

    Living with an ileostomy

    I will be getting a temporary ileostomy in December. I will have it about 6 months. I am trying to learn as much about having an ileostomy as possible and looking for some support groups to be able to ask qustions.

    5 Answers from the Community

    5 answers
    • CarolLHRN's Avatar

      Thank you so much for your book suggestion. I will see if it's on Amazon this evening. I reached out to the UOAA and found a local support group as well. I'll be able to go to a meeting before my surgery.

      I hear a lot about the marking process. I'm a bit nervous because when I asked the nurse at the surgeon's office about ostomy support, she referred me to the ACS. I just assumed a colon rectal surgeon would have a nurse on staff. I also read that some surgeons prefer to do their own markings. I have a pre-op appointment in a couple of weeks so I guess I will find out. I will also have about 3 weeks before the surgery after the appt so if I am not satisfied with what the surgeon has to say, I have some time.


      over 9 years ago
    • lovekitties' Avatar

      Hi Carol, my surgeon referred me to an ostomy nurse associated with my hospital. Call your surgeon and ask about it, don't wait for your pre-surgery appointment. The nurse not only will discuss the marking but also show you the supplies and how they are used. While it is not complicated, you need to know how to use them. Don't know what your living situation is, but I set up a small plastic cabinet with drawers in the bathroom to keep the supplies handy. There are lots of different types and I am sure the nurse will discuss that with you. As for the book, yes Amazon has it and it is even on Kindle if you have one. Am sure too that the local UOAA group will be a big help.

      over 9 years ago
    • Tammy2011's Avatar

      I had been diagnosed with stage IV colon/rectal cancer (in 1989) from a rare disease I inherited from my dad's side of family. I was only 22 yrs old and have been living with a ileostomy for 22 yrs..
      It is a good idea to get with others who know what it's like to go thru this. To share their input about supplies, what they did, what they experienced, etc. Everyone is different on how their bodies react to surgery, but important to keep a good support group.
      I can try to help out if you have questions.
      may God be with you during this process and keep you strong.

      over 9 years ago

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