iliostomy reversal surgery

Just wondering if anyone has had this surgery and willing to share some information.
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Comments

  • Semira
    Semira Member Posts: 381 Member
    nearly 3 months ago...
    my husband had his ileo reversed. All went far much better than we expected. He left hospital after about a week and since then everything has improved step by step. Still frequency and consistence of 'the output' have not returned to normal but are managable.

    Presently we are traveling 3 weeks through france and with one Immodium (Loperamid) each morning he is able to have normal active vacation (we are not the lazy beach kind).

    He eats everything he likes and with some stuff which in german is called 'Flohsamenschalen' (indian fleaseeds) the BM makes no problems the most time.

    Hugs from Germany
    Petra - still in France till saturday and typing on the phone so sorry for typos
  • John23
    John23 Member Posts: 2,122
    hippiechicks
    After my colorectal surgery back in 2006, and a bungled operation
    that finally (after three operations) ended with me having over
    four of five feet of colon removed and an Ileostomy placed....
    I had pleaded for a reversal. My pleas were staved off, saying that
    I needed to do chemo first, since the chemo results in severe diarrhea
    and having an ostomy would be of great help to my quality of life
    during treatments.

    I never did chemo. But after learning about what a reversal would
    do; how the very watery output will remain watery due to the lack
    of sufficient amount to colon to absorb/re-uptake the liquid to my
    system, I gave getting a reversal more serious thought.

    In 2010 I required surgery to remove an intestinal obstruction due
    to the adhesions from the 2006 surgery(s). Had I had a reversal back
    in 2006, the adhesions would have even more intense, since each
    surgery causes more adhesions.

    My original Ileostomy is/was a "end type", where it would have
    required the same amount of surgery as it took to provide the
    Ileostomy to begin with, to re-connect the intestines. One end
    is sticking out of my body, while the other end (to be connected to),
    is buried someplace within my body.

    A "loop type" ostomy is where a section of intestine is pulled
    out of the body, cut in half, and stitched to the abdomen to
    provide output into an appliance (pouching system). Both lumens
    (entrances to each section of intestine; holes) are easily seen
    projecting through. A reversal is made much easier in that
    case, since both ends are available right there, at that site.

    So, getting a reversal, and the outcome of it, makes a difference
    depending on:

    A. How much colon and small intestine is left
    B. If it's a "loop" or "end type" Ileostomy.

    The placement of the present Ileostomy is also an important
    consideration. If the present location is below the belt line,
    and does not interfere with the wearing of one's normal clothes;
    if it's located at an area where it is not bothersome... and if the
    stoma was formed properly (3/4 to 1 inch projection from the
    body), then you may want to re-think a reversal. The present
    location can not be re-used for later surgery of a new ostomy,
    and that can complicate a "re-reversal", if that should be necessary.

    You would want to make certain that there's enough colon left in
    to afford proper absorption of liquid, otherwise the output may
    be too liquid (like continual diarrhea) to offer much of a life without
    being near a toilet.

    It should be noted, that when they resect the section of colon that
    adjoins the small intestine, the "ileocecal valve" is removed (it's part
    of the colon). Without that valve, the frequency of output is not
    controlled as well by the body.

    So, there are many things to consider if the choice is going to be made,
    and it shouldn't be an easy or quick choice.

    You can learn more about ostomies here: UOAA Discussion Board

    There are worse things than having an ostomy!

    Best wishes for you and yours,

    John
  • hippiechicks
    hippiechicks Member Posts: 509
    Semira said:

    nearly 3 months ago...
    my husband had his ileo reversed. All went far much better than we expected. He left hospital after about a week and since then everything has improved step by step. Still frequency and consistence of 'the output' have not returned to normal but are managable.

    Presently we are traveling 3 weeks through france and with one Immodium (Loperamid) each morning he is able to have normal active vacation (we are not the lazy beach kind).

    He eats everything he likes and with some stuff which in german is called 'Flohsamenschalen' (indian fleaseeds) the BM makes no problems the most time.

    Hugs from Germany
    Petra - still in France till saturday and typing on the phone so sorry for typos

    Thank you for the
    Thank you for the encouraging news. How wonderful to hear you are enjoying life so soon after this surgery. I have read stories of this taking far longer to recoup and wondered if the quality of life is better before or after surgery, or if it is even worth reversing.

    Enjoy your remaining days in France!!
  • hippiechicks
    hippiechicks Member Posts: 509
    John23 said:

    hippiechicks
    After my colorectal surgery back in 2006, and a bungled operation
    that finally (after three operations) ended with me having over
    four of five feet of colon removed and an Ileostomy placed....
    I had pleaded for a reversal. My pleas were staved off, saying that
    I needed to do chemo first, since the chemo results in severe diarrhea
    and having an ostomy would be of great help to my quality of life
    during treatments.

    I never did chemo. But after learning about what a reversal would
    do; how the very watery output will remain watery due to the lack
    of sufficient amount to colon to absorb/re-uptake the liquid to my
    system, I gave getting a reversal more serious thought.

    In 2010 I required surgery to remove an intestinal obstruction due
    to the adhesions from the 2006 surgery(s). Had I had a reversal back
    in 2006, the adhesions would have even more intense, since each
    surgery causes more adhesions.

    My original Ileostomy is/was a "end type", where it would have
    required the same amount of surgery as it took to provide the
    Ileostomy to begin with, to re-connect the intestines. One end
    is sticking out of my body, while the other end (to be connected to),
    is buried someplace within my body.

    A "loop type" ostomy is where a section of intestine is pulled
    out of the body, cut in half, and stitched to the abdomen to
    provide output into an appliance (pouching system). Both lumens
    (entrances to each section of intestine; holes) are easily seen
    projecting through. A reversal is made much easier in that
    case, since both ends are available right there, at that site.

    So, getting a reversal, and the outcome of it, makes a difference
    depending on:

    A. How much colon and small intestine is left
    B. If it's a "loop" or "end type" Ileostomy.

    The placement of the present Ileostomy is also an important
    consideration. If the present location is below the belt line,
    and does not interfere with the wearing of one's normal clothes;
    if it's located at an area where it is not bothersome... and if the
    stoma was formed properly (3/4 to 1 inch projection from the
    body), then you may want to re-think a reversal. The present
    location can not be re-used for later surgery of a new ostomy,
    and that can complicate a "re-reversal", if that should be necessary.

    You would want to make certain that there's enough colon left in
    to afford proper absorption of liquid, otherwise the output may
    be too liquid (like continual diarrhea) to offer much of a life without
    being near a toilet.

    It should be noted, that when they resect the section of colon that
    adjoins the small intestine, the "ileocecal valve" is removed (it's part
    of the colon). Without that valve, the frequency of output is not
    controlled as well by the body.

    So, there are many things to consider if the choice is going to be made,
    and it shouldn't be an easy or quick choice.

    You can learn more about ostomies here: UOAA Discussion Board

    There are worse things than having an ostomy!

    Best wishes for you and yours,

    John

    Thank you John for your
    Thank you John for your thoughts. I have an "end type". I am actually quite happy with my ostomy for the most part. It does sit at the waist, but low rise jeans work well! I was told the same thing with the chemo, but have finished my treatments and now need another surgery to remove a new tumor. (unsure if this is cancerous, what type or if chemo is needed again)

    Was wondering if it was a good option to do the reversal while already opened again. I am weary of scar tissue strangulating my small intestine in the future and also, having no colon left at all, if this surgery is even a good choice for quality of life. So confused and surgery is approaching quickly.
  • John23
    John23 Member Posts: 2,122

    Thank you John for your
    Thank you John for your thoughts. I have an "end type". I am actually quite happy with my ostomy for the most part. It does sit at the waist, but low rise jeans work well! I was told the same thing with the chemo, but have finished my treatments and now need another surgery to remove a new tumor. (unsure if this is cancerous, what type or if chemo is needed again)

    Was wondering if it was a good option to do the reversal while already opened again. I am weary of scar tissue strangulating my small intestine in the future and also, having no colon left at all, if this surgery is even a good choice for quality of life. So confused and surgery is approaching quickly.

    Hippiechicks-

    Re:
    "now need another surgery to remove a new tumor"

    You should really consult with an experienced colorectal surgeon,
    and not one of the same group or organization as your present
    physicians. A second opinion is -always- worth the time.

    Rather than more chemo, surgery would do the job for you,
    and probably with less side effects.

    There's Laparoscopic surgery, where they use micro-tools through
    a small opening, rather than slice you end-to-end for full open surgery.
    A good colorectal surgeon can tell you the advantages, and if it's
    a possible choice for you.

    There's RFA (radio frequency ablation) that might be useful in
    your case. It's less invasive than open surgery, and can greatly
    reduce the size of a tumor.

    There's been great advances in surgical techniques, and all very
    useful for cancer removal.

    Nothing is guaranteed to rid the cancer completely, but some things
    are less invasive and carry less side effects than other methods.

    I would choose surgical methods over chemical treatments any
    day, for any reason, but it's a personal choice (as it should be).

    (You can click on my name and read my history and blog.....
    for whatever's it's worth)

    As far as your ostomy?

    I'd ask if the ileocecal valve is still there (it usually isn't if it's an
    "end" ileo), and exactly how much of the colon remains.

    If the valve is gone, or there's less than three feet of the five feet
    we usually have.... or a combination of both... and if you're
    adjusted well to having an ostomy and find it fairly easy to manage,
    I would leave it be, because trying to go back might be more
    of a problem than you want. I would rather have an ileostomy
    than have to wear "Depends" for the rest of my life.

    And you'll have to decide if you really want the surgeon to be
    digging around in there, looking for that loose end of colon
    that's managed to work it's way down in there someplace,
    and stretch that shortened piece to reconnect it....
    (gosh, that was a scary documentary)

    It's a life changing event, but being diagnosed with cancer is a
    life changing event.

    You'll do OK, just get other opinions from other colorectal surgeons
    while you have the time to. Ask nurses who they would recommend,
    they usually see things we peasants aren't privy to.

    And smile!

    Best wishes,

    John
  • joemetz
    joemetz Member Posts: 493
    Greetings

    In Dec 2011 I got the bag... and July 26, 2012 I had it reversed.

    I had radiation therapy 24 years ago to remove NonHodgkins Lymphoma... and my transvers colon was radiated badly. they think that's what caused my original tumor in my colon, that spread 4cm to my liver. (the cancer never hit the lymph nodes or any other organ).

    anyway... for the reveral they cut out 8 inches of the transverse colon (non-evasive surgery). He cut the colostomy hole bigger (big enough to get his hand in there. Then they cut incisions on the north side of my belly button and one in the side of me... that's where he put the "tools" into my stomach to complete the surgery.

    the reconnection and colon resection took about 4 or 5 hours.
    I recovered pretty well.

    Oh yeah... the doctor did an epidural (like the block that women get for pain when having a baby. It was a fantastic idea and the doctors who visited me told me that it was ingenious. Pain was minimal for the first four days.

    I was up and walking on the 2nd day after surgery and within 4 days i was passing gas and headed home on day 7. I stayed home from work for another two weeks... but by week three i was able to move around and everything was "working". Not completely "normal"... whatever that is... but NO MORE BAG!

    its been 7 weeks since surgery and i restarted a new chemo treatment plan for maintenance chemo to keep the remaining cancer in the liver and not allow it to move around or spread or grow.

    now i'm on Xeloda and Avastin, which i started yesterday.
    i feel better than i have felt in nearly 3 years (before i knew i had cancer).

    I was super nervous as i had heard many bad stories about this reversal surgery.
    what i discovered is that the people with the biggest problems usually have the biggest story to share. they are pissed off so they want to make sure they take out their anger by sharing their bad news with others. I get that.

    but those of us, like me, who had a very successful reconnection don't speak up and post details unless we are asked to do so.

    so that's why i share with you.
    it's awesome to be able to eat, drink and enjoy any and all foods and liquids.

    my best to you

    joe
  • RobinKaye
    RobinKaye Member Posts: 93
    joemetz said:

    Greetings

    In Dec 2011 I got the bag... and July 26, 2012 I had it reversed.

    I had radiation therapy 24 years ago to remove NonHodgkins Lymphoma... and my transvers colon was radiated badly. they think that's what caused my original tumor in my colon, that spread 4cm to my liver. (the cancer never hit the lymph nodes or any other organ).

    anyway... for the reveral they cut out 8 inches of the transverse colon (non-evasive surgery). He cut the colostomy hole bigger (big enough to get his hand in there. Then they cut incisions on the north side of my belly button and one in the side of me... that's where he put the "tools" into my stomach to complete the surgery.

    the reconnection and colon resection took about 4 or 5 hours.
    I recovered pretty well.

    Oh yeah... the doctor did an epidural (like the block that women get for pain when having a baby. It was a fantastic idea and the doctors who visited me told me that it was ingenious. Pain was minimal for the first four days.

    I was up and walking on the 2nd day after surgery and within 4 days i was passing gas and headed home on day 7. I stayed home from work for another two weeks... but by week three i was able to move around and everything was "working". Not completely "normal"... whatever that is... but NO MORE BAG!

    its been 7 weeks since surgery and i restarted a new chemo treatment plan for maintenance chemo to keep the remaining cancer in the liver and not allow it to move around or spread or grow.

    now i'm on Xeloda and Avastin, which i started yesterday.
    i feel better than i have felt in nearly 3 years (before i knew i had cancer).

    I was super nervous as i had heard many bad stories about this reversal surgery.
    what i discovered is that the people with the biggest problems usually have the biggest story to share. they are pissed off so they want to make sure they take out their anger by sharing their bad news with others. I get that.

    but those of us, like me, who had a very successful reconnection don't speak up and post details unless we are asked to do so.

    so that's why i share with you.
    it's awesome to be able to eat, drink and enjoy any and all foods and liquids.

    my best to you

    joe

    One week since surgery...
    I think this is my first question here - my husband had reversal surgery last Tuesday. He has a straight connect (low rectal tumor, 95% of rectum removed). So far not so good: no control and has to sit on the toilet sometimes for an hour. Trying to stick to a low residue diet, not that it matters as he's hardly eating. I'm giving him Metamucil, Immodium and marshmallows...don't laugh, saw that it helps on another board, anything to try and firm him up. He's still having bad cramping so much that it doubles him over. We got home from the hospital on Saturday and he has slept most of the time since, unless he's in the bathroom.

    I know there is an adjustment and it takes time. In the meantime am I doing anything wrong? Any other suggestions.

    Thanks,
    Robin
  • John23
    John23 Member Posts: 2,122
    joemetz said:

    Greetings

    In Dec 2011 I got the bag... and July 26, 2012 I had it reversed.

    I had radiation therapy 24 years ago to remove NonHodgkins Lymphoma... and my transvers colon was radiated badly. they think that's what caused my original tumor in my colon, that spread 4cm to my liver. (the cancer never hit the lymph nodes or any other organ).

    anyway... for the reveral they cut out 8 inches of the transverse colon (non-evasive surgery). He cut the colostomy hole bigger (big enough to get his hand in there. Then they cut incisions on the north side of my belly button and one in the side of me... that's where he put the "tools" into my stomach to complete the surgery.

    the reconnection and colon resection took about 4 or 5 hours.
    I recovered pretty well.

    Oh yeah... the doctor did an epidural (like the block that women get for pain when having a baby. It was a fantastic idea and the doctors who visited me told me that it was ingenious. Pain was minimal for the first four days.

    I was up and walking on the 2nd day after surgery and within 4 days i was passing gas and headed home on day 7. I stayed home from work for another two weeks... but by week three i was able to move around and everything was "working". Not completely "normal"... whatever that is... but NO MORE BAG!

    its been 7 weeks since surgery and i restarted a new chemo treatment plan for maintenance chemo to keep the remaining cancer in the liver and not allow it to move around or spread or grow.

    now i'm on Xeloda and Avastin, which i started yesterday.
    i feel better than i have felt in nearly 3 years (before i knew i had cancer).

    I was super nervous as i had heard many bad stories about this reversal surgery.
    what i discovered is that the people with the biggest problems usually have the biggest story to share. they are pissed off so they want to make sure they take out their anger by sharing their bad news with others. I get that.

    but those of us, like me, who had a very successful reconnection don't speak up and post details unless we are asked to do so.

    so that's why i share with you.
    it's awesome to be able to eat, drink and enjoy any and all foods and liquids.

    my best to you

    joe

    Joe -

    Re:
    "what i discovered is that the people with the biggest problems
    usually have the biggest story to share. they are pissed off so
    they want to make sure they take out their anger by sharing their
    bad news with others. I get that."


    Not really Joe; In fact, not at all.

    The outcome of a "reversal" is very dependent on many factors,
    some of which I explained above. If one is lucky enough to
    have had a very minimal amount of resection, and most of their
    intestine remains (and their rectum remains intact and of full use),
    then things will likely go fairly smooth for them.

    If there has been a large loss of colon, or the rectum, or if there's
    been a major loss of small intestine, there will likely be problems.

    Many surgeons play down the "bad parts", thinking that one's
    quality of life will be improved if they do not have an ostomy
    to adjust to, failing to explain the ramifications of an operation
    that may keep the patient in "Depends" or moored to the toilet
    forever.

    The UOAA site is best for learning about the ramifications, and
    to read about the "good outcomes", but again.... it all depends on
    what was resected and what remains.

    Some of us were luckier than others, but not knowing the difference
    between each of our operations only results in false hopes for
    a great outcome for those not so lucky.

    Education need not be a black cloud hanging over one's head,
    it could be the ray of sunshine that elevates us.

    Best of health,

    John
  • hippiechicks
    hippiechicks Member Posts: 509
    joemetz said:

    Greetings

    In Dec 2011 I got the bag... and July 26, 2012 I had it reversed.

    I had radiation therapy 24 years ago to remove NonHodgkins Lymphoma... and my transvers colon was radiated badly. they think that's what caused my original tumor in my colon, that spread 4cm to my liver. (the cancer never hit the lymph nodes or any other organ).

    anyway... for the reveral they cut out 8 inches of the transverse colon (non-evasive surgery). He cut the colostomy hole bigger (big enough to get his hand in there. Then they cut incisions on the north side of my belly button and one in the side of me... that's where he put the "tools" into my stomach to complete the surgery.

    the reconnection and colon resection took about 4 or 5 hours.
    I recovered pretty well.

    Oh yeah... the doctor did an epidural (like the block that women get for pain when having a baby. It was a fantastic idea and the doctors who visited me told me that it was ingenious. Pain was minimal for the first four days.

    I was up and walking on the 2nd day after surgery and within 4 days i was passing gas and headed home on day 7. I stayed home from work for another two weeks... but by week three i was able to move around and everything was "working". Not completely "normal"... whatever that is... but NO MORE BAG!

    its been 7 weeks since surgery and i restarted a new chemo treatment plan for maintenance chemo to keep the remaining cancer in the liver and not allow it to move around or spread or grow.

    now i'm on Xeloda and Avastin, which i started yesterday.
    i feel better than i have felt in nearly 3 years (before i knew i had cancer).

    I was super nervous as i had heard many bad stories about this reversal surgery.
    what i discovered is that the people with the biggest problems usually have the biggest story to share. they are pissed off so they want to make sure they take out their anger by sharing their bad news with others. I get that.

    but those of us, like me, who had a very successful reconnection don't speak up and post details unless we are asked to do so.

    so that's why i share with you.
    it's awesome to be able to eat, drink and enjoy any and all foods and liquids.

    my best to you

    joe

    Thank you so much for your
    Thank you so much for your share. It sounds like you are doing very well, Joe!! And that is wonderful to hear! I agree with you on the angry birds...I have been reluctant to post because of this. It does sound as if you had some colon to work with. I suppose this is where my real issue is. I have been researching this surgery for one year, since my diagnosis and new life began. I had decided against it because of the invasiveness and possible quality of life change, as I have no colon remaining.

    I will be asking the valve question today John...thank you. I believe this is where the answer is for me. I know I only have the rectum stump and a small amount of sigmoid left. 14 inches between the two to be exact....I have already had imaging done. The surgeon says "yeah" to that and it is enough. He also tells me it will be consistancy of soft serve ice cream with frequency of 4-5 times per day, that is with taking a "bulker" daily. He promised he would not leave me chained to the toilet. But .. I just don't know.

    My colorectal surgeon will begin the surgery (excellent surgeon...top notch), followed by gyn (also best in hospital and region so I hear), finishing with colorectal. I am concerned with recovery on this huge ordeal and also future chemos (if needed) "rocking the boat" so to speak with the "soft serve consistancy". I am a realist and know my odds are more than likely this will be the case given my stage and age. I am stage IIIc with colon.

    As far as the chemo and surgeons go....I will not know on chemo until after surgery. My new tumor was found on an ovary ... and grew very quickly. It may be benign, ovarian, or colon again. It must come out and a hysterectomy as well. This has got to be done for my health. The reversal is strickly convienence .... while they have me open and empty (lol). I do not think I would consider it otherwise....but this may be just to convienent. I am young...early 40's....and thin, no other health issues except I just finished 5FU in May. So, they tell me I am a perfect candidate for this surgery and should heal just fine. I am really just afraid for the quality of life change. Honestly ... the ileostomy and it's bag is just a minor incovience to me. It saved my life...and I like to enjoy it...actually, it seems to bother other people more than me.

    Time is ticking though to make this decision...One thing I am trying not to do is let fear stand in my way.
  • hippiechicks
    hippiechicks Member Posts: 509
    John23 said:

    Joe -

    Re:
    "what i discovered is that the people with the biggest problems
    usually have the biggest story to share. they are pissed off so
    they want to make sure they take out their anger by sharing their
    bad news with others. I get that."


    Not really Joe; In fact, not at all.

    The outcome of a "reversal" is very dependent on many factors,
    some of which I explained above. If one is lucky enough to
    have had a very minimal amount of resection, and most of their
    intestine remains (and their rectum remains intact and of full use),
    then things will likely go fairly smooth for them.

    If there has been a large loss of colon, or the rectum, or if there's
    been a major loss of small intestine, there will likely be problems.

    Many surgeons play down the "bad parts", thinking that one's
    quality of life will be improved if they do not have an ostomy
    to adjust to, failing to explain the ramifications of an operation
    that may keep the patient in "Depends" or moored to the toilet
    forever.

    The UOAA site is best for learning about the ramifications, and
    to read about the "good outcomes", but again.... it all depends on
    what was resected and what remains.

    Some of us were luckier than others, but not knowing the difference
    between each of our operations only results in false hopes for
    a great outcome for those not so lucky.

    Education need not be a black cloud hanging over one's head,
    it could be the ray of sunshine that elevates us.

    Best of health,

    John

    I think education is the key
    I think education is the key as well, although there are some clouds...I did turn to your suggestion of the site you posted. Still trying to get some answers. Again, it matters on what remains. I am having difficulty finding someone to talk to with my situation I suppose. Everyone seems to have more colon remaining or less rectum or both. I have all of my rectum, a small amount of sigmoid. 14 inches between the two. No colon. The plan is to connect the small intestine to the 14 inch stump. I am not one who is willing to do depends or stay home. I am young and not really bothered by my ostomy. I am proud to have it as it has saved my life. Although, it would be nice to put Humpty back together again ... if ... well you know the rest.
  • hippiechicks
    hippiechicks Member Posts: 509
    RobinKaye said:

    One week since surgery...
    I think this is my first question here - my husband had reversal surgery last Tuesday. He has a straight connect (low rectal tumor, 95% of rectum removed). So far not so good: no control and has to sit on the toilet sometimes for an hour. Trying to stick to a low residue diet, not that it matters as he's hardly eating. I'm giving him Metamucil, Immodium and marshmallows...don't laugh, saw that it helps on another board, anything to try and firm him up. He's still having bad cramping so much that it doubles him over. We got home from the hospital on Saturday and he has slept most of the time since, unless he's in the bathroom.

    I know there is an adjustment and it takes time. In the meantime am I doing anything wrong? Any other suggestions.

    Thanks,
    Robin

    Hi Robin,
    I wish I could be

    Hi Robin,

    I wish I could be of more help to you... I will tell you that from the research I have done over the last year and read over and over it really does depend on how much of each organ is remaining. Did your husband have a lot of his colon left? Did they image and measure the remaining rectum and check for muscle control? Did he have a temp. colostomy or was this one operation to remove a tumor and then reconnect right away? Is chemo involved?

    I have heard the marshmellow thing as well. Banana is always a great bulker. Mashed potatoes work really well...the instant kind.

    I wish you well and your husband. Hope for some relief for him.
  • hippiechicks
    hippiechicks Member Posts: 509
    RobinKaye said:

    One week since surgery...
    I think this is my first question here - my husband had reversal surgery last Tuesday. He has a straight connect (low rectal tumor, 95% of rectum removed). So far not so good: no control and has to sit on the toilet sometimes for an hour. Trying to stick to a low residue diet, not that it matters as he's hardly eating. I'm giving him Metamucil, Immodium and marshmallows...don't laugh, saw that it helps on another board, anything to try and firm him up. He's still having bad cramping so much that it doubles him over. We got home from the hospital on Saturday and he has slept most of the time since, unless he's in the bathroom.

    I know there is an adjustment and it takes time. In the meantime am I doing anything wrong? Any other suggestions.

    Thanks,
    Robin

    Hi Robin,
    I wish I could be

    Hi Robin,

    I wish I could be of more help to you... I will tell you that from the research I have done over the last year and read over and over it really does depend on how much of each organ is remaining. Did your husband have a lot of his colon left? Did they image and measure the remaining rectum and check for muscle control? Did he have a temp. colostomy or was this one operation to remove a tumor and then reconnect right away? Is chemo involved?

    I have heard the marshmellow thing as well. Banana is always a great bulker. Mashed potatoes work really well...the instant kind.

    I wish you well and your husband. Hope for some relief for him.
  • RobinKaye
    RobinKaye Member Posts: 93

    Hi Robin,
    I wish I could be

    Hi Robin,

    I wish I could be of more help to you... I will tell you that from the research I have done over the last year and read over and over it really does depend on how much of each organ is remaining. Did your husband have a lot of his colon left? Did they image and measure the remaining rectum and check for muscle control? Did he have a temp. colostomy or was this one operation to remove a tumor and then reconnect right away? Is chemo involved?

    I have heard the marshmellow thing as well. Banana is always a great bulker. Mashed potatoes work really well...the instant kind.

    I wish you well and your husband. Hope for some relief for him.

    Thanks hippiechicks
    He has all of his colon, no rectum. Surgery was in January and he has the ileostomy until last week. Prior to surgery he had six weeks of chemo/radiation and two rounds of FOLFOX and did six more rounds after surgery. I know the surgeon examined him prior to the surgery and he had a barium enema to check for leakage but that's it.

    I know it's way too early to tell but I sure hope this gets better - right now it's kind of scary.

    Robin
  • Coppercent
    Coppercent Member Posts: 158
    Hippiechicks,

    I will let you know how mine turns out in a couple of weeks! I am having reversal surgery done on October 3rd. I got my ileostomy last November and could have had it reversed in 6 weeks but my oncologist preferred I wait until I finished treatment. I finished treatment June 5 but my supervisors requested I wait unitl October when my work is a little slower. I agreed because they were very awesome and supportive when I had to take time off for surgery and hospital stays.

    I will say I have used an experienced colorectal surgeon for all of my surgeries and will use him again for my reversal. I have talked to several of his patients that have had reversals done through him and they are all doing well. They all went back to work in two to three weeks. I met most of them at the cancer center when I was getting my chemo and we kept contact info to share experiences after reversal. By the way, my surgeon is not connected with the cancer center. So I am pretty confident things will go well. I actually ran into one patient at lunch one day and was amazed at what she was eating so soon after reversal. And she was going back to work after lunch. She said she can eat anything! For me I have an ileostomy loop and most of my rectum removed.

    My surgeon is very confident that I will do well after surgery. He has told me I should be in the hospital 5 days and back to work in 2 weeks. He never sugar coats anything so I know he is being honest. If you heard him discuss my first surgery with me you would understand the sugar coat thing. He is always brutally honest! Of course, I do understand things can go wrong, especially after my first surgery. Peole that I have met in person are far more positive about their reversals then many of the ones I have read about on line. I think many people who have had issues search on line for support and asnwers where as those that don't have problems don't come on line.

    Good luck in your decision! Whatever decision you make will be the best one for you! By the way, if I wasn't able to get a reversal that would be fine too. I have done really well with my "Oscar"! Okay, I have had it so long it really needed a name!
  • hippiechicks
    hippiechicks Member Posts: 509

    Hippiechicks,

    I will let you know how mine turns out in a couple of weeks! I am having reversal surgery done on October 3rd. I got my ileostomy last November and could have had it reversed in 6 weeks but my oncologist preferred I wait until I finished treatment. I finished treatment June 5 but my supervisors requested I wait unitl October when my work is a little slower. I agreed because they were very awesome and supportive when I had to take time off for surgery and hospital stays.

    I will say I have used an experienced colorectal surgeon for all of my surgeries and will use him again for my reversal. I have talked to several of his patients that have had reversals done through him and they are all doing well. They all went back to work in two to three weeks. I met most of them at the cancer center when I was getting my chemo and we kept contact info to share experiences after reversal. By the way, my surgeon is not connected with the cancer center. So I am pretty confident things will go well. I actually ran into one patient at lunch one day and was amazed at what she was eating so soon after reversal. And she was going back to work after lunch. She said she can eat anything! For me I have an ileostomy loop and most of my rectum removed.

    My surgeon is very confident that I will do well after surgery. He has told me I should be in the hospital 5 days and back to work in 2 weeks. He never sugar coats anything so I know he is being honest. If you heard him discuss my first surgery with me you would understand the sugar coat thing. He is always brutally honest! Of course, I do understand things can go wrong, especially after my first surgery. Peole that I have met in person are far more positive about their reversals then many of the ones I have read about on line. I think many people who have had issues search on line for support and asnwers where as those that don't have problems don't come on line.

    Good luck in your decision! Whatever decision you make will be the best one for you! By the way, if I wasn't able to get a reversal that would be fine too. I have done really well with my "Oscar"! Okay, I have had it so long it really needed a name!

    Coppercent
    Thank you for your share. I am scheduled for the following week. Good luck to you and your speedy recovery! My surgeon has told me 4-12 day hospital stay, depending on intestine waking...then 4 week recovery. But, I have read online people are in agony up to two years out!

    I think you are also correct about the onliners as is Joe, and was hoping for more accuracy here. It is nice to hear you didn't mind your "Oscar"....mine is Raspberry...lol. I was starting to think I was a little strange...Although, I will say I had worked in the medical field for some time and cared for people with them, so it was not a shock to me.

    Positive news is good to hear.
  • hippiechicks
    hippiechicks Member Posts: 509
    RobinKaye said:

    Thanks hippiechicks
    He has all of his colon, no rectum. Surgery was in January and he has the ileostomy until last week. Prior to surgery he had six weeks of chemo/radiation and two rounds of FOLFOX and did six more rounds after surgery. I know the surgeon examined him prior to the surgery and he had a barium enema to check for leakage but that's it.

    I know it's way too early to tell but I sure hope this gets better - right now it's kind of scary.

    Robin

    Hi Robin,
    From what I have

    Hi Robin,

    From what I have read over the year he may just be ok. He has his colon which is the organ that absorbs all the fluid. I think for him it is just going to be a matter of getting that remaining muscle to work and control it. Time will hopefully take care of him. :) Well wishes for him and strength to you as you help him heal.
  • Coppercent
    Coppercent Member Posts: 158

    Coppercent
    Thank you for your share. I am scheduled for the following week. Good luck to you and your speedy recovery! My surgeon has told me 4-12 day hospital stay, depending on intestine waking...then 4 week recovery. But, I have read online people are in agony up to two years out!

    I think you are also correct about the onliners as is Joe, and was hoping for more accuracy here. It is nice to hear you didn't mind your "Oscar"....mine is Raspberry...lol. I was starting to think I was a little strange...Although, I will say I had worked in the medical field for some time and cared for people with them, so it was not a shock to me.

    Positive news is good to hear.

    Rasberry!
    Love that you named yours Rasberry! Way too funny because until you said that I never thought about it but the little guy really does look like a rasberry! I needed a laugh today!

    I think your stay may be longer because yours I believe you said is not the loop. Mine is a loop. I think attitude and your diet at first has a lot to do with it in some cases. I work for physicians at a Med School and I know they will be understanding if I need a lot of bathroom breaks so that helps with going back to work.

    I like you considered not having the reversal as well because I have gotten along well with Oscar but my surgeon convinced me that I will do well. He said he was 98% sure. I am very active too and my ostomy has not stopped me from doing the things I like to do.

    Keep us posted on your decision and progress!
  • hippiechicks
    hippiechicks Member Posts: 509

    Rasberry!
    Love that you named yours Rasberry! Way too funny because until you said that I never thought about it but the little guy really does look like a rasberry! I needed a laugh today!

    I think your stay may be longer because yours I believe you said is not the loop. Mine is a loop. I think attitude and your diet at first has a lot to do with it in some cases. I work for physicians at a Med School and I know they will be understanding if I need a lot of bathroom breaks so that helps with going back to work.

    I like you considered not having the reversal as well because I have gotten along well with Oscar but my surgeon convinced me that I will do well. He said he was 98% sure. I am very active too and my ostomy has not stopped me from doing the things I like to do.

    Keep us posted on your decision and progress!

    That sounds like an
    That sounds like an interesting job! And surely to be understood. I tried work last month with an epic fail. Not ready yet...then I got this new diagnosis, so out again...so so frustrating!

    Will do on the keeping an update...will be watching for yours as well...good luck to you!
  • swimmer22
    swimmer22 Member Posts: 60
    It's been 10 weeks for me!
    I had recital cancer surgery with a little rectum left (not sure how much). I had my ilostomy for 10 months. Reversal surgery was on a Tuesday morning and I was sent home Friday evening, so three days in the hospital. Once home, I had to return to the emergency room on Sunday evening as I wasn't feeling well and thought I had a blockage. See I went from diarrhea and frequent stools after surgery to nothing. I didn't have a bowel movement on Saturday and Sunday and by Sunday evening I had myself convinced had a problem.

    Well a trip to the emergency room and an x-ray showed no blockage and they sent me home. The next day things started working again. Part of my problem was I stopped all pain medications once I got home and I should have remained on them longer. I just hate the side effects of them but in retrospect I should have taken them and I would have felt much better. I wasn't eating much and the thought of food just made me feel ill.

    I had to sleep in a recliner for about a week after surgery as my stomach muscles were too sore to lay down flat then try to stand up. I returned to work full time in two weeks.

    I progressed quickly to small formed stools going about 4 times a day, in a consecutive pattern. Meaning I would have a bowel movement, then within the hour be back in the bathroom about 3-4 more times until I was "emptied" out. This pattern continued for about 5 weeks.

    I now have movements about twice a day; however, some days I don't go at all. Things have really settled down and I have no worries about having to be near a bathroom. I found that it's best not to think about it and just go with what happens. When I worry or try to plan if I will be able to ride in the car for a 4 hour trip or be stuck in a business meeting, that is when my mind makes me feel like I need to be near a bathroom. Kind of like a nervous stomach scenario.

    I wish you all the best. My immediate days following the procedure I regretted haveing the reversal and thought I should have left well enough alone (I adapted well to the ilostomy) but being where I am a short 10 weeks later it was well worth the reversal surgery. I am 48, currently showing no-evidence of disease and hope to enjoy life for many years to come. Best of luck to you!
  • danker
    danker Member Posts: 1,276
    I had on in 2010. Hospitals, being full of sick people, I got a kidney infection.they fixed that. Then I developed a fistula, Many more weeks with bag. When I met with surgeon to fix fistula-ne need. It was healing itself from the inside out.. Normal life since. Colonoscopy in 2011 was NED. Been NED ever since, living normal life. Assuming you will have a reversal,Good luck.