iliostomy reversal surgery

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Comments

  • hippiechicks
    hippiechicks Member Posts: 509 Member
    #22
    swimmer22 said:

    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!

    That is very reassuring! I
    That is very reassuring! I can't believe you were back to work so soon!! Wow!! It is so nice to hear some real stories ... it is making my decision easier. Thank you so much! One question...did you have remaining colon? It sounds like maybe you did. I am also one who does not do pain meds. Left the hospital after last surgery on motrin for the trip home and that was the end of that! :)
  • hippiechicks
    hippiechicks Member Posts: 509 Member
    #23
    danker said:

    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.

    Thank you for your share as
    Thank you for your share as well...that is another worry I have had was infection leading to more issues. Not knowing if I need to have chemo or what type of cancer I may dealing with, if any, is also making this difficult. But, as of today, I am leaning towards keeping surgery scheduled. I have found some reassuring statistics from a few web sites as well. Everyone has been so helpful!
  • RobinKaye
    RobinKaye Member Posts: 93
    #24
    hippiechicks said:

    That is very reassuring! I
    That is very reassuring! I can't believe you were back to work so soon!! Wow!! It is so nice to hear some real stories ... it is making my decision easier. Thank you so much! One question...did you have remaining colon? It sounds like maybe you did. I am also one who does not do pain meds. Left the hospital after last surgery on motrin for the trip home and that was the end of that! :)

    Ditto
    I read the post to my husband - helped reassure him that things were going to get
    better.
  • swimmer22
    swimmer22 Member Posts: 60
    #25
    hippiechicks said:

    Thank you for your share as
    Thank you for your share as well...that is another worry I have had was infection leading to more issues. Not knowing if I need to have chemo or what type of cancer I may dealing with, if any, is also making this difficult. But, as of today, I am leaning towards keeping surgery scheduled. I have found some reassuring statistics from a few web sites as well. Everyone has been so helpful!

    Answer to your question
    Hippiechicks (by the way-- like the screen name)

    To answer your question, yes my colon was still completely intact. There was no colon removed during the resection. I had a low-lying rectal tumor that was removed. Initially it was a large tumor and the surgeon thought I may need a permanent ostomy; however, I had a complete response to my chemotherapy/radiation treatments prior to surgery. My plum size tumor was reduced to nothing but scar tissue. The resection was to remove the scar tissue area and lymph nodes for pathology. Best of luck to you!
  • John23
    John23 Member Posts: 2,122 Member
    #26
    swimmer22 said:

    Answer to your question
    Hippiechicks (by the way-- like the screen name)

    To answer your question, yes my colon was still completely intact. There was no colon removed during the resection. I had a low-lying rectal tumor that was removed. Initially it was a large tumor and the surgeon thought I may need a permanent ostomy; however, I had a complete response to my chemotherapy/radiation treatments prior to surgery. My plum size tumor was reduced to nothing but scar tissue. The resection was to remove the scar tissue area and lymph nodes for pathology. Best of luck to you!

    swimmer22 -

    Thanks for the clarification!

    The outcome is dependent upon the situation, and the situation
    isn't always the same.

    Be well!

    John
  • joemetz
    joemetz Member Posts: 493
    #27
    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

    thanks John
    John

    thanks for your note.

    back when i was doing my research, prior to my reversal, i think i found ONE good post or person speaking out online to every 10 to 15 terrible stories. Scared the crap out of me.

    but, I guess i should have said it differently.

    but, thanks for educated and knowledge sharing... I get what you said there.... just wish i would have found your info prior to my reversal and maybe i would have been more calm.

    thanks again.

    my best

    Joe
  • Coppercent
    Coppercent Member Posts: 158
    #28
    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

    It is misinformed
    It is misinformed information like the following that makes reading blogs scary and sad.

    "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."

    I wonder how many people that you have met that had their complete rectum removed and not had any problems. I for one have met many in person. Having your whole rectum removed does not necessary likely mean there will be problems. Because this is not a accurate fact. If you have a skilled surgeon a reversal after a complete removal of the rectum can be very successful. Fortunately the colon can adapt well as the rectum. I know this because I have done a lot of research on this and met many people in person. They are doing well. Unfortunately a lot of what you read online is not accurate information.
  • John23
    John23 Member Posts: 2,122 Member
    #29
    Coppercent said:

    It is misinformed
    It is misinformed information like the following that makes reading blogs scary and sad.

    "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."

    I wonder how many people that you have met that had their complete rectum removed and not had any problems. I for one have met many in person. Having your whole rectum removed does not necessary likely mean there will be problems. Because this is not a accurate fact. If you have a skilled surgeon a reversal after a complete removal of the rectum can be very successful. Fortunately the colon can adapt well as the rectum. I know this because I have done a lot of research on this and met many people in person. They are doing well. Unfortunately a lot of what you read online is not accurate information.

    Coppercent -

    Re:
    "I wonder how many people that you have met that had
    their complete rectum removed and not had any problems."

    With or without a colostomy?

    For educational purposes:

    "Loss of Storage Capacity
    Normally, the rectum stretches to hold stool until you can get to
    a bathroom. But rectal surgery, radiation treatment, and
    inflammatory bowel disease can cause scarring that makes the
    walls of the rectum stiff and less elastic. The rectum then can't
    stretch as much to hold stool and fecal incontinence results.
    Inflammatory bowel disease also can irritate rectal walls, making
    them unable to contain stool."
    http://colorectal.surgery.ucsf.edu/conditions--procedures/fecal-incontinence.aspx

    "The rectum may also be responsible for incontinence. The rectum,
    located above the sphincter muscles, stores stool until it is
    time to defecate (move your bowels). Scarring from diseases such
    as Ulcerative colitis and Crohns disease or surgical removal of
    the rectum causes the rectum to lose the ability to hold stool.
    Stool has no where to be stored and leaks out."
    http://www.med.umich.edu/1libr/aha/umbowel_incontinence.htm

    "Common causes of fecal incontinence include constipation,
    diarrhea, and muscle or nerve damage. Fecal incontinence may be
    due to a weakened anal sphincter associated with aging or to
    damage to the nerves and muscles of the rectum and anus from
    giving birth"
    http://www.mayoclinic.com/health/fecal-incontinence/DS00477

    Listen, I could list a thousand of very qualified sites that will all
    explain the same thing: Without a rectum, you will very likely
    suffer fecal incontinence. It's not an "opinion", it's biological fact.

    What we lose after cancer victimizes us, it very difficult to replace,
    but attempting to face facts, can cause us to make decisions that
    may take even more from us.

    Hopes for your better health,

    John
  • hippiechicks
    hippiechicks Member Posts: 509 Member
    #30
    John23 said:

    swimmer22 -

    Thanks for the clarification!

    The outcome is dependent upon the situation, and the situation
    isn't always the same.

    Be well!

    John

    so true...I really am
    so true...I really am struggling with this one ....
  • Coppercent
    Coppercent Member Posts: 158
    #31
    Surgery yet?
    Hippiechick, just wondering if you have had your surgery yet? I had mine Wednesday Morning two days ago. The surgery went well and I was off the PCA pump 24 hours later. I didn't start any bowl movements until this morning and now I go about every 4 hours. I assume they will get worse before they get better. My surgeon said to eat a normal diet and if anything caused me diarhea or constipation before not to eat those for the first few weeks. Basically he advised me to listen to my body since all of our bodies are different. Hope your surgery goes well. I should be getting released to night or in the morning. Best of luck to you.
  • Coppercent
    Coppercent Member Posts: 158
    #32
    Surgery yet?
    Hippiechick, just wondering if you have had your surgery yet? I had mine Wednesday Morning two days ago. The surgery went well and I was off the PCA pump 24 hours later. I didn't start any bowl movements until this morning and now I go about every 4 hours. I assume they will get worse before they get better. My surgeon said to eat a normal diet and if anything caused me diarhea or constipation before not to eat those for the first few weeks. Basically he advised me to listen to my body since all of our bodies are different. Hope your surgery goes well. I should be getting released to night or in the morning. Best of luck to you.
  • hippiechicks
    hippiechicks Member Posts: 509 Member
    #33
    Coppercent said:

    Surgery yet?
    Hippiechick, just wondering if you have had your surgery yet? I had mine Wednesday Morning two days ago. The surgery went well and I was off the PCA pump 24 hours later. I didn't start any bowl movements until this morning and now I go about every 4 hours. I assume they will get worse before they get better. My surgeon said to eat a normal diet and if anything caused me diarhea or constipation before not to eat those for the first few weeks. Basically he advised me to listen to my body since all of our bodies are different. Hope your surgery goes well. I should be getting released to night or in the morning. Best of luck to you.

    Hi there Coppercent!! I am so

    Hi there Coppercent!! I am so glad to hear your surgery went well!!! How are you doing now?? I am sad to say mine did not go as smoothly ... but I am thankful that I am alive and well today.  Smile

     

  • Coppercent
    Coppercent Member Posts: 158
    #34
    John23 said:

    Coppercent -

    Re:
    "I wonder how many people that you have met that had
    their complete rectum removed and not had any problems."

    With or without a colostomy?

    For educational purposes:

    "Loss of Storage Capacity
    Normally, the rectum stretches to hold stool until you can get to
    a bathroom. But rectal surgery, radiation treatment, and
    inflammatory bowel disease can cause scarring that makes the
    walls of the rectum stiff and less elastic. The rectum then can't
    stretch as much to hold stool and fecal incontinence results.
    Inflammatory bowel disease also can irritate rectal walls, making
    them unable to contain stool."
    http://colorectal.surgery.ucsf.edu/conditions--procedures/fecal-incontinence.aspx

    "The rectum may also be responsible for incontinence. The rectum,
    located above the sphincter muscles, stores stool until it is
    time to defecate (move your bowels). Scarring from diseases such
    as Ulcerative colitis and Crohns disease or surgical removal of
    the rectum causes the rectum to lose the ability to hold stool.
    Stool has no where to be stored and leaks out."
    http://www.med.umich.edu/1libr/aha/umbowel_incontinence.htm

    "Common causes of fecal incontinence include constipation,
    diarrhea, and muscle or nerve damage. Fecal incontinence may be
    due to a weakened anal sphincter associated with aging or to
    damage to the nerves and muscles of the rectum and anus from
    giving birth"
    http://www.mayoclinic.com/health/fecal-incontinence/DS00477

    Listen, I could list a thousand of very qualified sites that will all
    explain the same thing: Without a rectum, you will very likely
    suffer fecal incontinence. It's not an "opinion", it's biological fact.

    What we lose after cancer victimizes us, it very difficult to replace,
    but attempting to face facts, can cause us to make decisions that
    may take even more from us.

    Hopes for your better health,

    John

    I had my reversal surgery

    I had my reversal surgery 10/03.  I have no rectum. With a great surgeon I am back to normal BM. The only difference is now I have to take a teaspoon of psyllium once a day.  I have come across several people without rectums that have also had successful reversals. I have a straight connect that works well. I am so glad I had faith on my surgeon. 

  • Coppercent
    Coppercent Member Posts: 158
    #35
    hippiechicks said:

    Hi there Coppercent!! I am so

    Hi there Coppercent!! I am so glad to hear your surgery went well!!! How are you doing now?? I am sad to say mine did not go as smoothly ... but I am thankful that I am alive and well today.  Smile

     

    Sorry it didn't go smoothly.

    Sorry yours didn't go smoothly. I was very lucky and things went well. We actually just did a long road trip over Christmas.  We went to NYC and for two days we walked all day. My teaspoon of psyllium is my best friend. 

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