• 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
    • KarenG_WN's Avatar

      Hi CarolLHRN,

      I wanted to make sure that someone responded to you with some information that can help. As the WhatNext network evolves, we will continue to add people with different experiences. We do have a strong group of people fighting, or who have fought, colon cancer so hopefully someone with this experience can weigh in.

      In the meantime, I found an Ileostomy Guide on the American Cancer Society's website that might help: http://www.cancer.org/Treatment/TreatmentsandSideEffects/PhysicalSideEffects/Ostomies/IleostomyGuide/index

      I will also see if I can find others who can give you some meaningful perspectives.

      You have our support every step of the way!


      about 5 years ago
    • lovekitties' Avatar

      Dear Carol, I highly recommend a book called "The Ostomy Book" by Mullen and McGinn. I was given it before my surgery when I got a perm colostomy. This book deals with all types of ostomies. It was written by a woman who had an ostomy and her daughter who is an RN. It certainly helped me to understand what was going to happen and how to learn to live with it. You should also consult with an Ostomy Nurse at the hospital where you will have surgery. One of the important things to have done is a 'marking' so that the surgeon knows the optimal placement of the stoma, even for those that are temporary. Ask any question about all this and I or someone else will try to help. Best wishes to you.

      about 5 years ago
    • 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.


      about 5 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.

      about 5 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.

      almost 5 years ago

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