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Thread: Mitrofanoff/ACE/Malone/Chait Cecostomy tube for adults

  1. #1

    Mitrofanoff/ACE/Malone/Chait Cecostomy tube for adults

    Hello.
    I have seen a few threads on here asking about the procedures listed in my title. I have spent 5+ years researching the procedures and reaching out to hospitals and doctors. Below are a list of the hospitals that I have found that perform the procedures on adults. At the end there is also a list of questions that I asked when communicating with the doctors. Please let me know if you have any questions.

    Please be patient if my reply takes a few days as I have had multiple complications, none of which are related to any of the previously mentioned procedures, that cause chronic pain that limits the amount of time I am able to sit.

    Unfortunately, I have had additional complications that have prevented me from having any of these procedures completed successfully. Therefore, I do not know what they are like in daily practice nor do I have firsthand knowledge about recovering from these procedures.

    Here is a link for some info on the Mitrofanoff: https://craighospital.org/resources/...noff-procedure
    Here is a link for some information on the ACE/Malone/Chait Cecostomy tube: http://c.ymcdn.com/sites/www.apsna.o...ocecostomy.pdf

    Here is a link to a thread on this forum about the Malone procedure: http://sci.rutgers.edu/forum/showthr...lone-Procedure

    Contact these hospitals' urology departments for information about the doctors that perform the surgeries. Also, the info on this list may not be complete or up to date since I have not been in touch with the doctors at these hospitals since 2017 or 2015.

    NYU Urology Associates and The University of Chicago Medicine & Biological Sciences both offer Mitrofanoff and Malone ACE as robot assisted, minimally invasive procedures.
    Johns Hopkins offers the Mitrofanoff as an open procedure. They also offer the ACE Chait Cecostomy tube placement.
    The Penn State Hershey Medical Center offers the Mitrofanoff and Malone ACE as open procedures.
    Cleveland Clinic offers Mitrofanoff and Malone ACE as open procedures (contact

    My Questions:
    1. Will I need to do a bowel cleanout prior to the surgery?

    2. After the surgery, what activities will I need to avoid and for how long?

    3. What tests will be needed and timing in relation to surgery?

    4. Which tests can I have done beforehand and which ones must wait until I get your hospital?

    5. How long after surgery before I am able to leave hospital?

    6. How long after surgery before I am able to travel home?

    7. What will long-term after surgery care be? How can this care be coordinated with my local urologist?

    8. In order to avoid compromising my surgery, will I need to have someone transfer me into and out of my wheelchair? If so, for how long?

    9. Anything else I can expect for my recovery in terms of treatment, medication, diet, and home care?
    Last edited by High_Tide; 01-22-2018 at 03:43 PM.

  2. #2
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  3. #3
    I find it surprising that the Malone antegrade continence enema (MACE) procedure is performed by a urologist and not a gastroenterologist.

  4. #4
    gjni, I was surprised by that, too. At Johns Hopkins radiology places the Chait tube if you don't have the Mitrofannoff done during the same operation.
    Last edited by High_Tide; 01-22-2018 at 03:45 PM.

  5. #5
    A gastroenterologist is not a surgeon, but most Malone or ACE procedures are done by a GI surgeon, not a urologist.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  6. #6
    Quote Originally Posted by SCI-Nurse View Post
    A gastroenterologist is not a surgeon, but most Malone or ACE procedures are done by a GI surgeon, not a urologist.

    (KLD)
    The difference being that not all gastroenterologists are surgeons, but a gastroenterologist may be a surgeon. And a gastroenterology surgeon is a doctor trained in surgery, who has devoted training in the field of gastroenterology surgery, but isn't necessarily a trained gastroenterologist?

    In the same vein, are all urologists surgeons or does the same apply as above?
    Last edited by gjnl; 01-22-2018 at 09:31 PM.

  7. #7
    Urology is a surgical specialty, although now days there are a number of urologists who only practice medical urology and don't do surgery (usually due to the high costs of malpractice insurance for surgeons).

    Gastroenterology is a medical, not a surgical specialty. Most initially did their residency in internal medicine, then specialized in GI problems in their final residency years or did a post-residency fellowship. These physicians deal with GI diseases such as ulcers, irritable bowel syndrome, gall bladder disease, etc. but do not do surgery. GI surgeons are general surgeons who have gone on to specialize in GI surgery, often during a post-residency fellowship.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  8. #8
    Quote Originally Posted by SCI-Nurse View Post
    Urology is a surgical specialty, although now days there are a number of urologists who only practice medical urology and don't do surgery (usually due to the high costs of malpractice insurance for surgeons).

    Gastroenterology is a medical, not a surgical specialty. Most initially did their residency in internal medicine, then specialized in GI problems in their final residency years or did a post-residency fellowship. These physicians deal with GI diseases such as ulcers, irritable bowel syndrome, gall bladder disease, etc. but do not do surgery. GI surgeons are general surgeons who have gone on to specialize in GI surgery, often during a post-residency fellowship.

    (KLD)
    Good clarification to make of your original generalization. My gastroentrolist is also a GI surgeon.

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