Illeostomy reversal, pros and cons

JanJan63
JanJan63 Member Posts: 2,478 Member
in Colorectal Cancer #1

I saw my surgeon yesterday and he says I can have it reversed if I want. The waiting list as about a year so I have time to really consider this. If it turns out that my lung spots are cancerous and there's not much they can do I won't get it reversed as I want whatever time I have to be good as long as possible but if I have more time then I have to make the decision.

I had IBS my entire adult life. It was terrible. Having to find a bathroom pretty much every public place I've ever been, the cramps, the sick feeling that gets so bad I felt like I was going to faint. Having to watch everything I eat with no spices, no rich foods, no dairy, and sometimes no nothing. The noise when going publicly, the smell, the embarassment. Sometimes not being able to go anywhere when it was particularly bad. Never being too far from a bathroom so I could never hike or go for a trail ride on my horse. Not even being able to go to something like a parade because of it and the concerns about proximity of bathrooms. Not wanting to go for dinner out. Actually choosing or turning down jobs based on where their bathroom was or how long of a drive it was.

The ostomy is annoying. It can be uncomfortable and has had accidents a few times. And it costs. Sometimes I'm out somewhere and it fills up at an astonishing rate and requires me to find a bathroom quickly. I have to get up and empty it pretty much every night at about 3 am. I have to be careful about not getting dehydrated. I only buy clothes that are loose enough to hide it. Sometimes when I'm changing my pouch it really gets going and it becomes a real pain in the rear. And if I eat something righ or spicy it can burn. But, I'd still say my quality of life is better with it in general.

Any thoughts on this? Do any of you that have had yours reversed regret it? I know I've kind of brought this up before and some people told me they've had rectal incontinence for years after the reversal. I am not willing to deal with that. It would be worse than I was before. While I hate having the bag hanging off of my tummy and worry about it constantly it's still not the extreme worry about finding a bathroom and the worry about my bowels every minute. Ugh, decisions, decisions. 

Comments

  • danker
    danker Member Posts: 1,276 Member
    #2

    I had my ileostome reversed as soon as i could-6weeks.  Developed a fistula requiring a bag for 6 more weeks, but th e fistula healed itself from the insid out.  Five years later, I still have diarrhea more often than I like, but lead a normal life.  Glad I did it!! Living with a bag is no fun,if you can get away from it.  Good luck to you no matter what you decide!

  • John23
    John23 Member Posts: 2,122 Member
    #3
    Colostomy or Ileostomy?

    Colostomy or Ileostomy?

     

    I’ve had an Ileostomy since 2006. Since 2010, I have had a “short bowel”, so there’s no chance to ever have a normal system…

     

    There are worse things to have to live with, than an Ostomy. You already cited the many problems you do not have since having an Ostomy, and that should be your guide.

     

    Weigh it up according to your own personal needs and requirements, and your own personal experience this far. It’s your life, and different than someone else’s. Other’s opinions are based on their own needs and not related to yours.

     

    But if you seriously want to know the outcome of other’s choices? Go to the United Ostomy board and ask there. https://www.uoaa.org/forum/index.php

     

     

    Good luck!

     

    Best of health,

     

    John

     

     

    John

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #4
    Hi

    I second what John said. 

    Your personal experience with IBS and with the ostomy should guide you in your decision.

    Some few folks don't have any issues after reversal, but with IBS I am not sure you could count on that.

    I know of one person who had the reversal, and after a year of being tied to the bathroom actually had the reversal undone and went back to the bag.

    As with most things with this disease and treatments, everyone can respond differently.

    Wishing you the best as you weigh your options.

    Marie who loves kitties

     

     

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #5
    John23 said:

    Colostomy or Ileostomy?

    Colostomy or Ileostomy?

     

    I’ve had an Ileostomy since 2006. Since 2010, I have had a “short bowel”, so there’s no chance to ever have a normal system…

     

    There are worse things to have to live with, than an Ostomy. You already cited the many problems you do not have since having an Ostomy, and that should be your guide.

     

    Weigh it up according to your own personal needs and requirements, and your own personal experience this far. It’s your life, and different than someone else’s. Other’s opinions are based on their own needs and not related to yours.

     

    But if you seriously want to know the outcome of other’s choices? Go to the United Ostomy board and ask there. https://www.uoaa.org/forum/index.php

     

     

    Good luck!

     

    Best of health,

     

    John

     

     

    John

    Thanks for the link John!

    Thanks for the link John! I'll check it out.

  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #6
    ileo reversal

    I could not wait to be done with my ileostomy so 8 weeks after my rectal cancer surgery I had  a reversal.  I then spent the next 18 mos in the bathroom or looking for one.  I struggled with incontinence and constant pain due to irritation from constant diarrhea.  I then made the toughest decision of my life and had a colstomy done.  The colostomy is easier to manage than the ileostomy was.  I havent looked back.  That was in 1/2015.  Good luck with your decision.  If you have any other questions let me know.  My surgeon had been doing this for a number of years and I was the only patient that had to have the reversal changed. I have alot of damage from radiation.

  • DD3
    DD3 Member Posts: 136 Member
    #7
    Moesimo said:

    ileo reversal

    I could not wait to be done with my ileostomy so 8 weeks after my rectal cancer surgery I had  a reversal.  I then spent the next 18 mos in the bathroom or looking for one.  I struggled with incontinence and constant pain due to irritation from constant diarrhea.  I then made the toughest decision of my life and had a colstomy done.  The colostomy is easier to manage than the ileostomy was.  I havent looked back.  That was in 1/2015.  Good luck with your decision.  If you have any other questions let me know.  My surgeon had been doing this for a number of years and I was the only patient that had to have the reversal changed. I have alot of damage from radiation.

    My

    wife had a temporary ileostomey.  She couldn't wait for the reversal.  She had more issues with the self esteem side then the actual bag itself. 

     

    After the reversal the first three months were rough.  Frequency/consistancy were big issues.  I felt so bad for her.  About 2 years later ---> basically no diarrhea.  Although I will say I believe we are at a new normal now.  She has days when she will "purdge."  She has learned through diet and fiber to help out to control things.  Food choices are more selective now a days. 

    Seems everyone system reacts differently.... I wish you well in your decision.

  • BillO60
    BillO60 Member Posts: 72
    #8
    Second time around for ileostomy and reversal

    Hi Jan - I second others who have said that it's based on your particular situation.  The problem is, unless you have a crystal ball, you won't know what your situation will be if you do have the reversal. The advantage you have now is that you do know what it's like to have the ileostomy.

    Just curious, is there something with your situation where you know the IBS wouldn't kick back in if the ileostomy is reversed and you are reconnected to your colon?  (or did I miss something,  which happens from time to time to time, in perpetuity). 

    This is the second time I've had an ileostomy. The first was about 40 years ago when I'd had emergency surgery for a rupture in my upper intestine and then had it reversed about 10 months later.

    In mid-August of this year I had surgery to remove a colo-rectal tumor and knew I'd have an ileostomy. Because of the position of the tumor and 6 weeks of chemo and radiation I was pretty much living in my bathrrom 24/7.  Most days and nights I was making between 20 and 25 trips to the bathroom.  So, although the ileostomy is annoying at times and can be somewhat tempramental, the 8 - 10 trips I make to the bathroom a day now to empty the bag is nothing. Plus I can actually drive places, go grocery shopping, sleep (mostly) through the night, go out and see sunlight, etc.

    Before the surgery I met with the surgeon to discuss a tempoary versus permanent ileostomy. Because the tumor was kinda-sorta low in the rectum I knew that some amount of the rectum was going to be removed.  Her best guesstimate was that once the ileostomy is reversed I will have some urgency and less time to get to a bathroom but it should be manageable. Since there's less rectum, instead of the once or twice a day bowel movement I had when I was healthy I might have 6 or so a day. 

    Will I regret the decision? I might, especially if her guesses were wrong and bowel movements are considerably more frequent and more urgent. But, being the optimist I am hoping that she was being conservative (because surgeon's generally are). But, I have 6 months before they'd do the reversal so who knows....

    I've had this ileostomy for 8 weeks and it did take me a few weeks to adjust to (a.k.a., obsess over) it and not worry about it leaking, falling off, making noise, etc. Now the bag is just another piece of (albeit odd) clothing. You'll eventually get used to it and it will become routine.  I've even seen post where people name their ostomy... okay, that's a bit creepy but just saying..

    I hope you find the answers you seek and wish you the best.

    Bill

  • Trubrit
    Trubrit Member Posts: 5,800 Member
    #9
    BillO60 said:

    Second time around for ileostomy and reversal

    Hi Jan - I second others who have said that it's based on your particular situation.  The problem is, unless you have a crystal ball, you won't know what your situation will be if you do have the reversal. The advantage you have now is that you do know what it's like to have the ileostomy.

    Just curious, is there something with your situation where you know the IBS wouldn't kick back in if the ileostomy is reversed and you are reconnected to your colon?  (or did I miss something,  which happens from time to time to time, in perpetuity). 

    This is the second time I've had an ileostomy. The first was about 40 years ago when I'd had emergency surgery for a rupture in my upper intestine and then had it reversed about 10 months later.

    In mid-August of this year I had surgery to remove a colo-rectal tumor and knew I'd have an ileostomy. Because of the position of the tumor and 6 weeks of chemo and radiation I was pretty much living in my bathrrom 24/7.  Most days and nights I was making between 20 and 25 trips to the bathroom.  So, although the ileostomy is annoying at times and can be somewhat tempramental, the 8 - 10 trips I make to the bathroom a day now to empty the bag is nothing. Plus I can actually drive places, go grocery shopping, sleep (mostly) through the night, go out and see sunlight, etc.

    Before the surgery I met with the surgeon to discuss a tempoary versus permanent ileostomy. Because the tumor was kinda-sorta low in the rectum I knew that some amount of the rectum was going to be removed.  Her best guesstimate was that once the ileostomy is reversed I will have some urgency and less time to get to a bathroom but it should be manageable. Since there's less rectum, instead of the once or twice a day bowel movement I had when I was healthy I might have 6 or so a day. 

    Will I regret the decision? I might, especially if her guesses were wrong and bowel movements are considerably more frequent and more urgent. But, being the optimist I am hoping that she was being conservative (because surgeon's generally are). But, I have 6 months before they'd do the reversal so who knows....

    I've had this ileostomy for 8 weeks and it did take me a few weeks to adjust to (a.k.a., obsess over) it and not worry about it leaking, falling off, making noise, etc. Now the bag is just another piece of (albeit odd) clothing. You'll eventually get used to it and it will become routine.  I've even seen post where people name their ostomy... okay, that's a bit creepy but just saying..

    I hope you find the answers you seek and wish you the best.

    Bill

    Six or more

    I still get up to the six a day, and to be honest, its not as bad as it seems. Its the urgency that is the problem. If you can make it to the loo in time, then six is doable. 

    Sue - Trubrit

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