time frame for ostomy reversal? and update on hubby

jen2012
jen2012 Member Posts: 1,607 Member
in Colorectal Cancer #1

Hubby had surgery april 2013, planned on getting reversal last summer.  Surgeon said after doing leak test and sigmoidoacopy, that there was a narrowing and he needed some dilation procedures.  Had 3 of those and was getting ready for reversal when he had the recurrence in the bones.  Had surgery for the femur break and then back on folfox from dec thru May.  Saw the surgeon today and he thinks we have missed the boat on reversal.  Hubby is less than thrilled.  Has anyone had reversal after a year or more?

Update...cea is holding at 1.2, March scan was clear.  He just started maintenance chemo ...low dose xeloda (1500 twice a day)  every day...no break, plus avastin every 3 weeks.  Planning to go back to work in 2 weeks.  Been out since oct.  

Comments

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #2
    No advice on the ostomy since

    No advice on the ostomy since i was fortunate enought not to have one. Congratulations on the goodtest results. That is the most important thing.

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #3
    The lenght of time may not be the issue

    Since your hubby has had a recurrance and is on maintenance chemo, those factor into reversal or no reversal.

    Your hubby would have to be off chemo for a period of time before and after surgery.  It may be that there is a concern if he stops there may be another recurrance.

    I understand it is disappointing, but living with a colostomy is not difficult.  In fact I know of several folks who had the reversal, then had so many issues with being tied to the bathroom, that they actually had a reversal of the reversal and went gratefully back to a colostomy.

    I hope that things improve for your hubby.

    Marie who loves kitties

  • TxKayaker
    TxKayaker Member Posts: 176
    #4
    Lovekitties said:

    The lenght of time may not be the issue

    Since your hubby has had a recurrance and is on maintenance chemo, those factor into reversal or no reversal.

    Your hubby would have to be off chemo for a period of time before and after surgery.  It may be that there is a concern if he stops there may be another recurrance.

    I understand it is disappointing, but living with a colostomy is not difficult.  In fact I know of several folks who had the reversal, then had so many issues with being tied to the bathroom, that they actually had a reversal of the reversal and went gratefully back to a colostomy.

    I hope that things improve for your hubby.

    Marie who loves kitties

    I waited one month after

    I waited one month after chemo to have the reversal done in Dec. 2009 .... 

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #5
    janderson1964 said:

    No advice on the ostomy since

    No advice on the ostomy since i was fortunate enought not to have one. Congratulations on the goodtest results. That is the most important thing.

    Thanks Jeff!

    Thanks Jeff!

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #6
    Lovekitties said:

    The lenght of time may not be the issue

    Since your hubby has had a recurrance and is on maintenance chemo, those factor into reversal or no reversal.

    Your hubby would have to be off chemo for a period of time before and after surgery.  It may be that there is a concern if he stops there may be another recurrance.

    I understand it is disappointing, but living with a colostomy is not difficult.  In fact I know of several folks who had the reversal, then had so many issues with being tied to the bathroom, that they actually had a reversal of the reversal and went gratefully back to a colostomy.

    I hope that things improve for your hubby.

    Marie who loves kitties

    No the onc always said she

    No the onc always said she could fit a break in.  The surgeon is concerned the plumbing won't work.  He's had it for a year and is used to it, but he always looked forward to getting rid of it .   The matter of fact ness of the surgeon was somewhat annoying.  And he kept saying "at this juncture it probably won't be reversable". When I asked it that meant never he said probably never and quickly made his exit.  Grrr....surgeons...

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    #7
    jen2012 said:

    No the onc always said she

    No the onc always said she could fit a break in.  The surgeon is concerned the plumbing won't work.  He's had it for a year and is used to it, but he always looked forward to getting rid of it .   The matter of fact ness of the surgeon was somewhat annoying.  And he kept saying "at this juncture it probably won't be reversable". When I asked it that meant never he said probably never and quickly made his exit.  Grrr....surgeons...

    Get another opinion...

    his surgeon shouldn't have brushed you off like that. My brother had a temporary ostomy and it was reversed a couple of months after his rectal surgery. He couldn't handle the ostomy, so they had him in rehab until it was reversed. He has issues with his bowels now. He has accidents so he uses adult pull ups. Part of it is the chemo, but he had issues when he wasn't on chemo, too. I think the bowel surgery did something that caused him to have incontinence sometimes. Good luck!

    Lin

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #8
    Jen

    No idea on osteomy, however I can understand his disappointment, I think it wouldn't hurt to chck with other surgeon (maybe two) and see what they say.

    Im glad his scan is clear WHOOOOO HOOOOOOO!!!!!! And CEA is low, wow, no break from Xeloda, must b because of the low dose?  Continued good scans to him!!!

    Winter Marie

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #9
    UncleBuddy said:

    Get another opinion...

    his surgeon shouldn't have brushed you off like that. My brother had a temporary ostomy and it was reversed a couple of months after his rectal surgery. He couldn't handle the ostomy, so they had him in rehab until it was reversed. He has issues with his bowels now. He has accidents so he uses adult pull ups. Part of it is the chemo, but he had issues when he wasn't on chemo, too. I think the bowel surgery did something that caused him to have incontinence sometimes. Good luck!

    Lin

    Thanks Lin, that is my

    Thanks Lin, that is my worry...He finds someone to reverse and then ends up with diapers.  I'm not sure which would be worse.

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #10
    herdizziness said:

    Jen

    No idea on osteomy, however I can understand his disappointment, I think it wouldn't hurt to chck with other surgeon (maybe two) and see what they say.

    Im glad his scan is clear WHOOOOO HOOOOOOO!!!!!! And CEA is low, wow, no break from Xeloda, must b because of the low dose?  Continued good scans to him!!!

    Winter Marie

    Yeah onc went to asco couple

    Yeah onc went to asco couple of weeks ago and there was talk of constant low dose being more beneficial and easier on person.  I think it's easier to remember too...instead of remembering when to stop and begin.

     

    Hope you are recovering nicely!!

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #11
    Great news on the CEA!

    And from everything I've read, people seem to do really well on the low dose chemo.  I'll bet he's excited about getting back to work!

    As for the ostomy, I don't have any personal experience, but I always think a 2nd opinion is a good idea.  If he got it reversed, and it didn't work out, he could always have it put back (which I have seen on the forums before, so it's not that unusual).  He might feel better about the whole thing if he at least gets the chance to give it a shot.

  • Lisa2012
    Lisa2012 Member Posts: 142
    #12

    I have had an ostomy for over two years now and reversal is still not out of the picture, so  I do not believe that there is a timeline.  I understand that everyone is different and in my experience, with the people that I know, men have a more difficult time than women. Maybe try to figure out your husbands biggest issue with the ostomy and then work to resolve that issue.   I found a great product called a stealth belt that contains my pouch so that I don't have to worry about people seeing it.   I play volleyball and sometime my shirt rides up and that can be embarrassing..   I know people use them for swimming and stuff too.

     

    lisa

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    #13
    jen2012 said:

    Thanks Lin, that is my

    Thanks Lin, that is my worry...He finds someone to reverse and then ends up with diapers.  I'm not sure which would be worse.

    He wears the pull ups to prevent accidents.

    It doesn happen sometimes. He had a lower anterior resection. The tumor was in the rectum just starting to get into the colon. His bowels have never been the same since. Since he is intellectually disabled, he had a really hard time with the ostomy. They had to keep him in rehab until it was reversed. It was not a fun time for him. He was hospitalized for a couple of months. Wound care was very involved, trying to keep his ostomy clean and preventing skin infection. I hope he never has to go through that again.

    Good luck!

    Lin

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