Experiences with Ileostomy

An ileostomy is an opening in the belly made during surgery. Ileostomy surgery is performed when the colon and rectum are diseased or removed due to cancer. The end of the ileum is brought out to expose the lining of the small intestine (a colostomy is formed from the large intestine) and made into an opening called a stoma, usually on the lower right of the abdomen. An ileostomy bag is attached to the stoma and digestive contents are emptied through the ileostomy stoma. Ileostomy care includes wearing the bag at all times and emptying it about 5-8 times daily. Ileostomy reversal is an option if bowel problems are solved after treatment otherwise a permanent ileostomy may be performed.

Living with an ileostomy is very different from hearing all the facts about the ileostomy surgery and ileostomy stoma. It may be helpful to speak to an ostomy nurse through your ileostomy or colostomy process. It is also helpful to read firsthand accounts on what it is like to live with an ileostomy, whether it is short-term or permanent. WhatNexter’s have shared information on their experiences with an ileostomy, problems with ileostomy reversal, and asked “How do I choose which surgery for colorectal cancer?”.

    • inaJAR
    • Experience with Adenocarcinoma, Colorec...
    about 1 month ago
    inaJAR's Avatar

    Ileostomy

    Procedure or Surgery

    Very painful. Worse than the first ileostomy and colon resection combined. Very slow recovery due to five week hospitalization an...

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    Went as Expected: Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
    • In512
    • Experience with Adenocarcinoma, Colorect...
    4 months ago
    In512's Avatar

    Ileostomy

    Procedure or Surgery

    Was operated in november 2016 (one month after diagnose), laparoscopic operation, with removal of 25 cm of colon (tumor was at the r...

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    Went as Expected: Strongly Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
    • jskbkk
    • Experience with Adenocarcinoma, Colorec...
    8 months ago
    jskbkk's Avatar

    Ileostomy

    Procedure or Surgery

    I had surgery to remove my rectum and ileostomy to allow that part to heal. I had a reversal only 3 weeks afterwards. Now it has bee...

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    Went as Expected: Strongly Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  1. about 1 year ago
    overcomer2014's Avatar

    Ileostomy

    Procedure or Surgery

    The ileostomy was created after the tumor was removed from my colon/rectum in May 2016. Some days were better than others, but I es...

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    Went as Expected: Neutral/NA
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
    • Samswr74
    • Experience with Colorectal (Colon) Ca...
    about 1 year ago
    Samswr74's Avatar

    Ileostomy

    Procedure or Surgery

    I don't even know where to begin. Got ileostomy with colon surgery. Reversed after liver bisection, but because abscess acted up aga...

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    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
    2 Comments
    • kymberd
    • Experience with Colorectal (Colon) Cancer
    about 1 year ago
    kymberd's Avatar

    Ileostomy

    Procedure or Surgery

    His platelets dropped on day 3 of take down.....downhill from there. Dwayne had a rough road for 3 months with wound vacs, weakness,...

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    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
    • kymberd
    • Experience with Colorectal (Colon) Cancer
    about 1 year ago
    kymberd's Avatar

    Ileostomy

    Procedure or Surgery

    This was a nightmare. The bags would not stay on if Dwayne moved. They had to create a bridge to even get a bag on. Dwayne had 6 wee...

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    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
    • Sham4125
    • Experience with Colorectal (Colon) Ca...
    about 1 year ago
    Sham4125's Avatar

    Ileostomy

    Procedure or Surgery

    My procedure will be reversed after I am done with my second round of chemo.

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    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
    • deborahd
    • Experience with Colorectal (Colon) Ca...
    over 1 year ago
    deborahd's Avatar

    Ileostomy

    Procedure or Surgery

    It was surgery...ileostomy ,surgery, chemo and then a twisted bowel ,2 hernias...finally was feeling somewhat normal for 2 years and...

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    Went as Expected: Disagree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    over 1 year ago
    Skyemberr's Avatar

    Ileostomy

    Procedure or Surgery

    I had two more procedures done with my ileostomy, vaginal reconstruction and tumor removal with my colon being reconnected.These com...

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    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Agree
    3 Comments
    • TrailRider
    • Experience with Colorectal (Colon) ...
    over 1 year ago
    TrailRider's Avatar

    Ileostomy

    Procedure or Surgery

    This was an ileostomy REVERSAL! Easy surgery (compared to the LAR 10 months previous).

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    Went as Expected: Strongly Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  2. almost 2 years ago
    trimamajenn's Avatar

    Ileostomy

    Procedure or Surgery

    Hated the bag, had it 6 wks, it leaked all the time, so I had a terrible rash the whole time, wouldn't have been as bad if I didn't ...

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    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
    0 Comments
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