• Colostomy Takedown

    Asked by lisaissa on Thursday, May 16, 2013

    Colostomy Takedown

    Hi everyone! I'm new to this site and this is my first post. Hopefully I'll be able to get some advice :)

    I'm 27 years old and just finished a year of treatment for stage IV colorectal cancer. Yay for being done! Well, almost done. Back in November I had surgery that required a temporary colostomy. I am soon approaching the time to get it reversed! I am wondering two things:

    When did you know you were ready for the reversal?
    What was it like after the reversal?

    It might seem crazy, but I am considering leaving it. With it, I've been able to lead a normal life. I'm afraid that without it my life will be all about planning my next trip to the bathroom. Hoping to hear some success stories from anyone who's had a reversal! Thank you in advance for any advice anyone has to offer :)

    12 Answers from the Community

    12 answers
    • BuckeyeShelby's Avatar

      Can't help w/your question, as I've not had a colostomy. Just wanted to give you a congrats on completing treatment. I'm sure someone else will chime in soon who can help with your question.

      over 7 years ago
    • lisaissa's Avatar

      Thank you so much :)

      over 7 years ago
    • LauraJo's Avatar

      I had an ileostomy, not colostomy, but I would think the post-reversal issues are much the same. First of all, your doc will tell you when your body is ready for reversal, then let you decide. Most folks are quite ready to get rid of it, but I actually held off an extra month so that I could attend my nieces wedding without fear of an accident. Once reversed, it takes some time for your body to get back to normal. I'm guessing you still have your rectum? Or did they remove it & replace it with a j-pouch? Cause that will make a difference in your "return to normal" time. However, yes, normal will return for most folks, or at least close to it. I'm not going to lie, there is a period of training/re-training, but hey, if you can manage a bag, you can manage that. After all, you are a survivor!

      over 7 years ago
    • lisaissa's Avatar

      My dr says I am ready (phew)...so thankful this can be reversed! I have less than 10% of my rectum left and no j-pouch. What was recovery like for you?

      over 7 years ago
    • CrazyHarry's Avatar

      I just had my surgery for rectal resection of my cancer so I'm a good 6-8 months away from my decision. I do have third hand experience. My wife and her sister both had colectomies due to colitis and had j pouches that they struggled with for years and finally went for the permanent solution and they are much happier and healthier. I also have a niece who is just a little olde than you and does ok with her j pouch. But does have occasional issues.

      Since you are so young I would go with the reconnect and see what happens. Maybe you will be one of the lucky ones. Which you already are having beat your cancer.

      You can always have it put back in at a later date if if gets unmanageable.

      over 7 years ago
    • Tesfa's Avatar

      Hi Lisa,

      My wife is in exactly same situation with you. She needthe reversal but her surgons are not interested in that as they lost hope for unknown reason

      over 7 years ago
    • cindywho's Avatar

      Hi Lisaissa My name is Cindy Burnett live in Sherburn Minnesota. I had to wear a bag for 6 months after my surgery I had stage 3 colorectal cancer. I am doing great after my reversal. No problems what so ever. Yes I was told by the doctor when you have to go to the bathroom go right away no waiting. It will take time but if I can do so can you. So now when I need to go to the bathroom now I can wait alittle bit but not a lot. I was told in 2009 about my cancer went thru all treatments had my 2 surgeries and then my reversal in 2010. Feel great go every 6 months for my checkups the doctor tells me that I am looking good. I just wish I could get my weight back on. I eat a lot but just cannot get back up to where I want to be. Good Luck!!! Hope to hear how everything went for you. Cindy Burnett colorectal cancer survivor 4 years

      over 7 years ago
    • Mfausset1's Avatar

      I just wanted to reply since your story seems so close to mine. First of all, congrats on completing your treatments! What a sigh of relief, right?! May God bless you and bring you many more years of health. :) I am a 27 yr old family, just finished up treatment for stage III colon cancer, and had my reversal from my ileostomy in March. I can completely understand the anxiety/nervousness about the reversal, but the excitement of getting everything back to "normal". I scoured the Internet for DAYS leading up to mine- with so many horror stories, I was unsure whether it was worth proceeding with. However, I did, and I will tell you it was well worth it in my opinion! Recovery from the surgery was a breeze compared to my first surgery. Within 3 weeks, I felt well enough to gallivant with my family around DC all day, and have kept up with activities such as that since then. My job is caring for a very active 15month old, so it's a requirement! :) I have had no incontinence issues yet *knock on wood*, can always hold it until I can get to the bathroom, and have yet to have a day where I go more than 8-10x a day. And let me just say, sleeping through the night without having to wake up for bathroom problems has been amazing! There are two things that were/are rough though.. Gas pains were quite the bear for a few weeks after surgery (and even a little now), and at the risk of being TMI, the time of the month can be a whole other ball game!! But aside from that, the new "normal" is well worth it to me. I know I may be considered one of the lucky ones, which I attribute to many months of prayers leading up to the reversal! Keep faith, I'm convinced God gives his hardest battles to his strongest warriors- heck, you've beat cancer, you can do this! :) Feel free to contact me if you have any questions!

      over 7 years ago
    • joyce1979's Avatar

      I had an ileostomy reversal. Hope this helps. My reversal was a success and greatly anticipated. With the ileostomy , every fiber of my life seemed to be dictated by it. (would it leak, am I eating the right stuff, is it infected, is it o.k.?) After the reversal my life went back to normal as in before the surgery. The bowel has to adjust again and you have go slow on the foods until you know what agrees with you.. But the reversal really wasn't any problem or trouble at all. It was wonderful not to have to worry about leaks and also to wear regular clothing without the bulge. It is your personal decision and you must do what works for you. Just wanted to let you know that I am glad I had the reversal.

      over 7 years ago
    • LauraJo's Avatar

      Well, I can only tell you about my recovery, everyone is different. The surgery was pretty simple compared to the LAR surgery. I was out of the hospital in less than a week, but was sent home with an open wound, which I had to pack every day until it filled in. THe doc said if they closed it, and any stool was left, it would get infected, I guess that's pretty standard with reversal, so there's something for you to ask about. It's gross, but after what you have already dealt with, a piece of cake. I was back to work part time three weeks post surgery. The bowels take some time to wake up & they won't let you leave the hospital until you go, so they don't send you home with disfunctional parts. Then of course, its a question of adding foods back into your diet slow.ly, possibly needing to take fiber for a while, and discovering what foods cause you problems. For people who have had their rectum completely removed, there is an adjustment period, while the j-pouch which is made out of a loop of colon, stretches, and adapts to functioning as a storage facility. SInce you still have part of your rectum, you may avoid some of this, but essentially this means, right after surgery, you go frequently, and it is loose. As you add food & fiber, the frequency should reduce & things should be more solid. THis takes time...I am almost two years out from my takedown, and while once I got past the first month or two, I have felt pretty normal, but over that time, my function has continued to improve to pretty much pre-surgery normal. The first couple of weeks are the worst....you spend a lot of time dashing to the bathroom and you wonder if you will EVER be normal. It DOES get better. And there are things that you can do to get thru that period...if you want, I can give you my e-mail to discuss.

      over 7 years ago
    • carm's Avatar

      Welcome to the site. I am an oncology nurse here and I think it is a great idea to get that reversal. Sometimes long term appliance use can result in infections and why add that to your purse of worries. I say get the reversal and kick that overdrive into the forward position and never look back. Congratulations to you, Carm RN.

      over 7 years ago
    • peanut12's Avatar

      Thanks for all the input. I have stg 3 rectal cancer and in November had a J-loop and colostomy. It has been a whirlwind. I was told a few weeks after the surgery cancer was in the lymph nodes and would need chemo. I am in the midst of this now and if all goes ok I should be ready for a reversal in July. I am very nervous about this and have read good and bad opinions and outcomes. I am going to have it reversed if the chemo works and its refreshing to hear good stories and outcomes. Thanks for your experience! Mary

      over 3 years ago

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