ileostomy reversal.

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Comments

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member

    Hi Krista, the take down is
    Hi Krista, the take down is supposed to be 6 wks after my chemo is done which will be in dec. I had my resection and ostomy on june 2. that will be 6 1/2 mths with the ostomy. I can stop chemo and get the reversal done, but will just have to finish the chemo after the surgery. I thought it would be better to get the chemo out of the way and then the surgery. Should I do it sooner and just finish the chemo after? So hard to know what to do.. Thanks Petrina

    I am waiting for chemo to be finished. I just didn't want to have to deal with chemo and after effects and then a reversal. I say take care of one problem at a time. My surgeon won't do it it in the middle of chemo anyway but I wouldn't want that either.

    Kim
  • mommyof2kds
    mommyof2kds Member Posts: 519

    I am waiting for chemo to be finished. I just didn't want to have to deal with chemo and after effects and then a reversal. I say take care of one problem at a time. My surgeon won't do it it in the middle of chemo anyway but I wouldn't want that either.

    Kim

    My husband made a good
    My husband made a good point, all the ostomy output I get from the chemo would be worse if I had a reversal and then had all the diarrhea when it may be difficult to control after anyway. I would probley be making one issue alot more difficult if I did the ostomy and then finished the chemo..
  • kristasplace
    kristasplace Member Posts: 957 Member

    Hi Krista, the take down is
    Hi Krista, the take down is supposed to be 6 wks after my chemo is done which will be in dec. I had my resection and ostomy on june 2. that will be 6 1/2 mths with the ostomy. I can stop chemo and get the reversal done, but will just have to finish the chemo after the surgery. I thought it would be better to get the chemo out of the way and then the surgery. Should I do it sooner and just finish the chemo after? So hard to know what to do.. Thanks Petrina

    If i knew now!
    I had such an argument with my oncologist about this issue. Whether or not to get the takedown before i started the six months of chemo. I had heard about the time crunch with having bowel re-training problems, and didn't want to mess around with it. My oncologist strongly recommended that i do the chemo first to be aggressive. I didn't want to. He presented a strong argument, and won. Well, my surgeon could have done the reversal six weeks after the January 08 resection, then i would have needed maybe six more weeks to heal. As it was, i didn't start chemo until three months after the resection anyway!!! By the time i was finished with chemo, i had lost my insurance, and took a while to get it back. Then i couldn't schedule the takedown because my surgeon was booked. Finally, the takedown was scheduled for February, 09. Guess what?? They found a tight stricture while i was on the table, and she couldn't dilate it enough to give me functional bowels. I received two more dilations over the next few months, and finally had the takedown on May 1st. As a result of all this, i have not been able to get a colonoscopy for these two years since diagnosis. We're supposed to get one every six months for the first year or two, so i'm a few behind (no pun intended)!

    Now my body is exhibiting all of my pre-diagnosis symptoms, and it's very probable i have a recurrence. Two years is the time most people get their recurrences, if they're going to get one at all.

    This is a bit of a touchy subject for me because it's been the story of my entire journey. I was symptomatic two years prior to diagnosis, and if the docs had been doing their job properly, i could've been diagnosed as a stage I, or II, and be may be lacking many of the problems i have today. Nothing can be done about that, but i do hope that what's happening to me doesn't happen to anyone else. Information is power, and that seems to be the main thing us "non-medical" CC people can give to one another. I truly believe many of the doctors we have to deal with just don't know enough. Our own bodies, of course, know much more.

    I wish you all the best with it, and please remind us of your reversal date in December so we can wish you the best, and pray for an easy recovery!

    Hugs,
    Krista
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    I actually had my reversal about 8 weeks after my resection and not 5. (sorry) That was 6 years ago. I was given the option of having it done before or after having my post op chemo. I was still out of work from the surgery and wanted to be reversed so I went for it. Unfortunately it did not work for me, I was the first patient that my doc had to do a colostomy after a reversal. So I am definitely the exception. I still would have done the reversal and I do not regret the colostomy. I had all of my rectal tissue removed and have alot of radiation damage. I also had 2 bowel obstructions in that 8 week period and both required hospitalization.

    If I were you I would go ahead with the sugery. Please email me if you have any more questions.

    I wish you the best.

    Maureen
  • mommyof2kds
    mommyof2kds Member Posts: 519

    If i knew now!
    I had such an argument with my oncologist about this issue. Whether or not to get the takedown before i started the six months of chemo. I had heard about the time crunch with having bowel re-training problems, and didn't want to mess around with it. My oncologist strongly recommended that i do the chemo first to be aggressive. I didn't want to. He presented a strong argument, and won. Well, my surgeon could have done the reversal six weeks after the January 08 resection, then i would have needed maybe six more weeks to heal. As it was, i didn't start chemo until three months after the resection anyway!!! By the time i was finished with chemo, i had lost my insurance, and took a while to get it back. Then i couldn't schedule the takedown because my surgeon was booked. Finally, the takedown was scheduled for February, 09. Guess what?? They found a tight stricture while i was on the table, and she couldn't dilate it enough to give me functional bowels. I received two more dilations over the next few months, and finally had the takedown on May 1st. As a result of all this, i have not been able to get a colonoscopy for these two years since diagnosis. We're supposed to get one every six months for the first year or two, so i'm a few behind (no pun intended)!

    Now my body is exhibiting all of my pre-diagnosis symptoms, and it's very probable i have a recurrence. Two years is the time most people get their recurrences, if they're going to get one at all.

    This is a bit of a touchy subject for me because it's been the story of my entire journey. I was symptomatic two years prior to diagnosis, and if the docs had been doing their job properly, i could've been diagnosed as a stage I, or II, and be may be lacking many of the problems i have today. Nothing can be done about that, but i do hope that what's happening to me doesn't happen to anyone else. Information is power, and that seems to be the main thing us "non-medical" CC people can give to one another. I truly believe many of the doctors we have to deal with just don't know enough. Our own bodies, of course, know much more.

    I wish you all the best with it, and please remind us of your reversal date in December so we can wish you the best, and pray for an easy recovery!

    Hugs,
    Krista

    My goodness, what a journey
    My goodness, what a journey you have had, sorry to hear of all the things that you have been through. I really hope it is just a nasty hemmroid that you have, hoping that you are able to get your colonoscopy soon for peace of mind. I guess I am going to wait till the chemo is done for the reversal, I would like to get the chemo over with rather than just delay it. Not sure what will happen after that, I guess it will be a wait and see issue. Wishing you all the best.. Petrina
  • yncpo
    yncpo Member Posts: 2
    tiny one said:

    I am one that has had alot of problems from my reversal. My surgeon says it's from the radiation that I received. I had my ileostomy for 10 months. I was reversed in Dec 2007. I wear a pad at all times. I try not to eat to large a meal and avoid alot of foods. I do have better control now but it took quite a while for that to get better. I don't work. When I feel like I have to go and it's urgent I run to the bathroom and it takes me quite awhile for things to pass through. Sometimes after I start to get soreness. Right after my reversal the frequency was as much as 19 times a day. I take meds now, lomotil, to keep stool from continously slowly moving thru. I usually get some relief for a few hours after I take the meds. This reversal was harder on me mentally than the cancer treatment. I take it one day at a time now.

    Problems after reversal
    Diagnoised with stage 3 rectal cancer in April 07. Chemo/radiation for six weeks. Rejuvenate for 8 weeks with tumor removed 25 Sep 07. Rejuvenate for 5 months while wearing a bag. Had no problem with the bag other 7 times the adhesive did not hold. Reversal 15 Jan 08. Have had little relief from constipation/diarrea. Number of GOOD days far less than not so good days. Balmex has provided much relief from burning of the butt. Have small bowel movement without my knowledge until the burning. Surgeon said it would be a year or two before I got back to a somewhat normal life. I am waiting for the miracle to occur. On my really GOOD days I don't go to the bathroom at all and can do most things I did before. On my not so good days, 10-15 trips to the bathroom is not unusual. A feeling of not completing a BM is very common. Two good days in a row is seldom. A BIG DUMP usually precedes a good day. I wear guards for men (pads) always.
    I have taken the same approach as you, one day at a time. Do what I can when I can. If you, or anyone has any suggestions on what I can do, or what they have done, I would appreciate it if they would please share their thoughts.

    Thanks,

    Charlie
  • NWGirl
    NWGirl Member Posts: 122 Member
    yncpo said:

    Problems after reversal
    Diagnoised with stage 3 rectal cancer in April 07. Chemo/radiation for six weeks. Rejuvenate for 8 weeks with tumor removed 25 Sep 07. Rejuvenate for 5 months while wearing a bag. Had no problem with the bag other 7 times the adhesive did not hold. Reversal 15 Jan 08. Have had little relief from constipation/diarrea. Number of GOOD days far less than not so good days. Balmex has provided much relief from burning of the butt. Have small bowel movement without my knowledge until the burning. Surgeon said it would be a year or two before I got back to a somewhat normal life. I am waiting for the miracle to occur. On my really GOOD days I don't go to the bathroom at all and can do most things I did before. On my not so good days, 10-15 trips to the bathroom is not unusual. A feeling of not completing a BM is very common. Two good days in a row is seldom. A BIG DUMP usually precedes a good day. I wear guards for men (pads) always.
    I have taken the same approach as you, one day at a time. Do what I can when I can. If you, or anyone has any suggestions on what I can do, or what they have done, I would appreciate it if they would please share their thoughts.

    Thanks,

    Charlie

    UOAA Web-site for temporary ostomies/reversals
    If anyone is interested, the UOAA web-site has a separate group for temporary ostomies and reversals - here's a link - http://www.uoaa.org/forum/viewforum.php?f=25

    I had my ileo for a year while I healed and went through chemo/radiation. I have no rectum. It took about 8 months for things to finally get to a point where it was managable, but I can live with what my "new normal" has evolved into.

    The UOAA web-site has a lot of people going through this transition if you want to check it out. Some have great success, some don't - lots fall in between.
  • mommyof2kds
    mommyof2kds Member Posts: 519
    Moesimo said:

    I actually had my reversal about 8 weeks after my resection and not 5. (sorry) That was 6 years ago. I was given the option of having it done before or after having my post op chemo. I was still out of work from the surgery and wanted to be reversed so I went for it. Unfortunately it did not work for me, I was the first patient that my doc had to do a colostomy after a reversal. So I am definitely the exception. I still would have done the reversal and I do not regret the colostomy. I had all of my rectal tissue removed and have alot of radiation damage. I also had 2 bowel obstructions in that 8 week period and both required hospitalization.

    If I were you I would go ahead with the sugery. Please email me if you have any more questions.

    I wish you the best.

    Maureen

    My ileostomy takdown
    My ileostomy takdown recovery wasn't too bad. It has been 3 mths now and I am guessing what my new normal will be. I have never had incontinence issues or running t obathroom etc... I did have an ileus at the beginning, NO constipation, but issues with the stool moving to the rectum to give me the urge to go.. So now, I have learned, that even if I don't feel the urge to go, attempt pushing every day and I will have a bowel movement, the pushing stimulates the stool to move to rectum and gives me the urge to go. BUt I usually have to stimulate it by daily pushing. BUt I can live with that... Hope all is well with you guys.
  • SNassy
    SNassy Member Posts: 1
    Illestomy
    Hello My name is Suzan, and I got my reversal done back in 1996, I was the second case that the doctor performed on, and it was a great success, I do not take any meds, nor do I have an issue with it, the only issues I have is at night when or if I am stress my bowels will go on their own....
    But if you stop eating after a certain time you will be able to control....

    Try not to eat too many gasey foods.
  • La.Grammy
    La.Grammy Member Posts: 35
    ileostomy reversal
    My husband had his ileostomy reversed in 2009 after having it for 7 months.
    I had found information about kegel exercises online.
    He did the kegel exercises 10 to 15 times a day for about 2 months prior to having his reversal.
    After the reversal he was amazed that none of the bad things that we were expecting happened.
    You can google Kegel exercises & get the information.

    Hope this helps
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Praying
    I don't have any info, but I'm praying it goes very well.

    *hugs*
    Gail
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    La.Grammy said:

    ileostomy reversal
    My husband had his ileostomy reversed in 2009 after having it for 7 months.
    I had found information about kegel exercises online.
    He did the kegel exercises 10 to 15 times a day for about 2 months prior to having his reversal.
    After the reversal he was amazed that none of the bad things that we were expecting happened.
    You can google Kegel exercises & get the information.

    Hope this helps

    thanks la grammy
    i have my reversal in two weeks so am goggling kegel now.
    thanks,
    pete
  • John23
    John23 Member Posts: 2,122 Member
    mommyof2kds -
    Well, first of all, I doubt anyone would recommend a reversal
    prior to the completion of chemo treatments, and/or the possibility
    of continued chemo treatments. An ostomy takes a whole load
    off your rear-end, as far as burning from diarrhea, etc.!

    Secondly, it makes a major difference "how much" of your
    intestines have been removed, to be able to fathom what type
    of results of a reversal will have.

    For instance: If the ileocecal valve has been removed, output
    will generally be faster and looser. If a large percentage of
    your colon has been removed, there will be very watery and
    loose output, along with very frequent output.

    There are also various of rectal/anal removal procedures, all
    that can make a dramatic difference in control, or lack thereof.

    The gang over at UOAA can be of great help to you, since
    they deal with ostomies specifically (not always cancer related).

    The bottom line? You can always get a reversal at a later time,
    so -do not- rush into making a decision!

    In 2006, I was demanding a reversal, but was told it was too
    soon after my initial surgery for a reversal. Now.....I'm glad I
    didn't get the reversal. Only one foot of my colon remained, and
    the ileocecal valve had been removed; my output back then
    would have been as liquid as it was out of the ileostomy, and
    very difficult to manage.

    Today, now that I've recently lost 1/2 of my small intestine, my
    output through the rectum would have been a continual event.
    I much prefer being able to choose a place to empty my pouch,
    than trying to find a clean toilet (or any toilet) every fifteen minutes
    or less, all day and night.

    You've got to weigh -your- situation, not base your decision
    on someone else's experience.

    I hope that helps?

    Best of health!

    John
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    John23 said:

    mommyof2kds -
    Well, first of all, I doubt anyone would recommend a reversal
    prior to the completion of chemo treatments, and/or the possibility
    of continued chemo treatments. An ostomy takes a whole load
    off your rear-end, as far as burning from diarrhea, etc.!

    Secondly, it makes a major difference "how much" of your
    intestines have been removed, to be able to fathom what type
    of results of a reversal will have.

    For instance: If the ileocecal valve has been removed, output
    will generally be faster and looser. If a large percentage of
    your colon has been removed, there will be very watery and
    loose output, along with very frequent output.

    There are also various of rectal/anal removal procedures, all
    that can make a dramatic difference in control, or lack thereof.

    The gang over at UOAA can be of great help to you, since
    they deal with ostomies specifically (not always cancer related).

    The bottom line? You can always get a reversal at a later time,
    so -do not- rush into making a decision!

    In 2006, I was demanding a reversal, but was told it was too
    soon after my initial surgery for a reversal. Now.....I'm glad I
    didn't get the reversal. Only one foot of my colon remained, and
    the ileocecal valve had been removed; my output back then
    would have been as liquid as it was out of the ileostomy, and
    very difficult to manage.

    Today, now that I've recently lost 1/2 of my small intestine, my
    output through the rectum would have been a continual event.
    I much prefer being able to choose a place to empty my pouch,
    than trying to find a clean toilet (or any toilet) every fifteen minutes
    or less, all day and night.

    You've got to weigh -your- situation, not base your decision
    on someone else's experience.

    I hope that helps?

    Best of health!

    John

    Thread from 2009
    Seems to have been revived.
  • Buckwirth said:

    Thread from 2009
    Seems to have been revived.

    This comment has been removed by the Moderator