I need the best ileostomy reversal surgeon in Southern California

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SunshineJH
SunshineJH Member Posts: 1
edited March 2014 in Colorectal Cancer #1
My 28 yr old son Jeff who lives in San Antonio, TX had to have a colon resection about a yr 1/2 ago due to cancer from AIDS and has had to live with the "temporary" ileostomy since. It's been a HORRIBLE experience for him as many of you know and his doctors have decided FOR him that this is the best life for him and refuse to reverse it. We are devastated, disappointed and feel TOTALLY betrayed but they have that choice so we're told so are desperately searching for a surgeon here in California that will give my son back the life. Can anyone recommend the best doctor for this? I am new to CA myself so am not familiar with the doctors here but found this website and am hoping for a miracle...HELP PLEASE!!!

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  • Patteee
    Patteee Member Posts: 945
    #2
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    I don't know any surgeons in
    I don't know any surgeons in CA- I am in Minnesota- one I could recommend at the Mayo Clinic though :)

    I am confused why they are refusing to reverse the ileostomy? Is there some medical reason for refusing to reverse it or just a doctor preference? As long as there is no medical reason why he can't have it reversed, he should be able to find a colorectal surgeon that will.

    Good luck :)
  • John23
    John23 Member Posts: 2,122 Member
    #3
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    SunshineJH -


    Re:
    "It's been a HORRIBLE experience for him "

    Well, it was, and remains to be a HORRIBLE experience to me also.

    I'm in my 60s, and had been given a "temporary" ileostomy after
    they botched my initial surgery for a colon resection, and had
    to re-open and do it again; I woke up with this bag attached.

    My ileostomy is not a "loop type", it is a "closed end" type;
    that matters greatly !

    For me, a reversal will take the same operation as before.

    They will have to open me up around all that scar tissue, around
    and between all the adhesions and hernias, and attempt to connect
    the two ends without causing a major infection like I had initially.

    I will also be facing the likelihood of ending up with other damage
    to other organs, since the room to work has been greatly decreased.

    So it'd be a possible, if not very likely:
    Damage to kidneys,
    Damage to small intestines
    Adhesions
    Hernias
    Erectile dysfunction
    Bowel Incontinence .
    Urinary Incontinence

    The last three on the list are the most important for him to
    seriously consider having to live with, instead of his present ostomy.

    There's another individual on this board, who is demanding a
    reversal for the same reasons as your son. And although a
    reversal is something any ostomate would desire, one should
    realize that the operation can leave one in much worse condition.

    And yes, there are times that reversals don't work out, and
    creating another ostomy would have to be done in another area
    of the body that may not be too desirable.

    So, if your son's ileostomy is the "closed end" type, he should
    consider all the facts I have presented to you above.

    There are things worse than having to live with an ostomy, and
    at his young age..... those things should be carefully considered.

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