Urge to move bowels that no longer exist--advice sought

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coloCan
coloCan Member Posts: 1,944 Member
edited March 2014 in Colorectal Cancer #1
Five and a half weeks I go I underwent a colostomy. Periodically I get incredible urge to deficate as if I had a functioning rectum. From those who have experienced this, how long will these urges last? I know its "normal"-the so=called amputation effect, but it at times drives me craZY......Thanks.....Steve

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  • Patteee
    Patteee Member Posts: 945
    #2
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    do you have a temporary or
    do you have a temporary or permanent colostomy
    mine was temporary= but the urge was still there and I would pass clumps of mucus. The feeling would get less and less, like toward the end of the 6 months maybe once a week. I do know initially it would drive me nuts- then the colostomy nurse told me that the rectum still gives off mucus, an important function still intact.
  • coloCan
    coloCan Member Posts: 1,944 Member
    #3
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    Patteee said:

    do you have a temporary or
    do you have a temporary or permanent colostomy
    mine was temporary= but the urge was still there and I would pass clumps of mucus. The feeling would get less and less, like toward the end of the 6 months maybe once a week. I do know initially it would drive me nuts- then the colostomy nurse told me that the rectum still gives off mucus, an important function still intact.

    To Pattee:permanent
    tho the chemo/radiation reduced size of tumor, as it was at very end of rectum, permanent colostomy necessary--wasn't going to argue with surgeon as he explained situation rather well and I trusted his ability. Nevertheless, I cannot get comfortable, am still in pain, can not sit on **** for more than two miinutes at a time ,, have difficulty sleeping and still have four months of chemo to look forward to....wish me luck
  • Patteee
    Patteee Member Posts: 945
    #4
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    coloCan said:

    To Pattee:permanent
    tho the chemo/radiation reduced size of tumor, as it was at very end of rectum, permanent colostomy necessary--wasn't going to argue with surgeon as he explained situation rather well and I trusted his ability. Nevertheless, I cannot get comfortable, am still in pain, can not sit on **** for more than two miinutes at a time ,, have difficulty sleeping and still have four months of chemo to look forward to....wish me luck

    oh definitely good luck :)
    oh definitely good luck :) mega good luck vibes your way
    so the entire rectum was taken out? if so, not sure I understand the urge
    are you taking pain pills on a regular basis?
    yes, I can well imagine that sitting on ones butt after what you have been through would be painful :(
    it is going to take time, you know that right?
  • coloCan
    coloCan Member Posts: 1,944 Member
    #5
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    Patteee said:

    do you have a temporary or
    do you have a temporary or permanent colostomy
    mine was temporary= but the urge was still there and I would pass clumps of mucus. The feeling would get less and less, like toward the end of the 6 months maybe once a week. I do know initially it would drive me nuts- then the colostomy nurse told me that the rectum still gives off mucus, an important function still intact.

    To Pattee:yeah
    know it will take time but I've never been as weak/skinny/sleepless as currently am.Try to walk daily around apartment-up to 22 minutes straight-but still spend alot of time lying in bed, watching tv or reading, lately started to listen to some music again.Things don't mean what they used to......Steve
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #6
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    coloCan said:

    To Pattee:yeah
    know it will take time but I've never been as weak/skinny/sleepless as currently am.Try to walk daily around apartment-up to 22 minutes straight-but still spend alot of time lying in bed, watching tv or reading, lately started to listen to some music again.Things don't mean what they used to......Steve

    Steve, exactly the same here.....
    I was operated on July 15th 2008 and I go through the same thing.....I had my inner sphincter muscle removed and also my rectum and have an ostomy at my sigmoid. I too have "phantom" feelings that I need to fart or wake up in the middle of the night with a slight urge to poop the old way... This is a normal function that became involuntary for your body and it is still a function that is hard for muscle memory after so many years to forget. I was sewn shut in the tail end and it felt like a pair of socks had been sewn up with it. That was the flesh folded enough under so that the stitches do not break free from the damage the radiation did during treatment. I too had a hard time sitting at all for about 6 weeks then all of a sudden I could. I also had to lay in bed with my legs lifted up to keep my hind end from becoming unbearable to lay on. Standing was only manageble for about 3-4 hours at a time tops, it would be lean on one side then the other then finally laying back down again. Yep, the skinny/weak/sleepless was exactly the same for me...There's just so much tv a man can watch...I got out and walked until I had to lay down. The more exercise you get the better off you will be in a shorter amount of time. It sucks but it will become lots better soon enough...The real problem with this disease and recovery from it is the patience you have to have ....Hang in there, everything you are dealing with is normal for what you have been through...It will get better, it already is better, you lived through it........Your friend, Clift
  • coloCan
    coloCan Member Posts: 1,944 Member
    #7
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    Buzzard said:

    Steve, exactly the same here.....
    I was operated on July 15th 2008 and I go through the same thing.....I had my inner sphincter muscle removed and also my rectum and have an ostomy at my sigmoid. I too have "phantom" feelings that I need to fart or wake up in the middle of the night with a slight urge to poop the old way... This is a normal function that became involuntary for your body and it is still a function that is hard for muscle memory after so many years to forget. I was sewn shut in the tail end and it felt like a pair of socks had been sewn up with it. That was the flesh folded enough under so that the stitches do not break free from the damage the radiation did during treatment. I too had a hard time sitting at all for about 6 weeks then all of a sudden I could. I also had to lay in bed with my legs lifted up to keep my hind end from becoming unbearable to lay on. Standing was only manageble for about 3-4 hours at a time tops, it would be lean on one side then the other then finally laying back down again. Yep, the skinny/weak/sleepless was exactly the same for me...There's just so much tv a man can watch...I got out and walked until I had to lay down. The more exercise you get the better off you will be in a shorter amount of time. It sucks but it will become lots better soon enough...The real problem with this disease and recovery from it is the patience you have to have ....Hang in there, everything you are dealing with is normal for what you have been through...It will get better, it already is better, you lived through it........Your friend, Clift

    Thanks for the words of encouragement
    There are times when I wonder if it was all worth it but what was the alternative? By the time I finally took colonoscope I was stage 3, had no time really for second opinion and was lucky my main doctor, my lung doctor-I also have COPD-knew the people/FACILITY currently keeping me alive.I was scared shitless.(not really=had runs most of the time due to blockage and then from treatment.) Its nice to hear from people who have gone thru what I have to face. Thanks for your experience, Clift.....Steve
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #8
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    coloCan said:

    Thanks for the words of encouragement
    There are times when I wonder if it was all worth it but what was the alternative? By the time I finally took colonoscope I was stage 3, had no time really for second opinion and was lucky my main doctor, my lung doctor-I also have COPD-knew the people/FACILITY currently keeping me alive.I was scared shitless.(not really=had runs most of the time due to blockage and then from treatment.) Its nice to hear from people who have gone thru what I have to face. Thanks for your experience, Clift.....Steve

    Anytime Bud...adding
    that also while I was healing there were fluids that built up causing severe pains in my tail area. They did leave a few small "drainage" openings there to allow it to drain, The pain got almost unbearable one day and I squatted to pick something up and it felt as though I had peed in my pants. What happened is my drain plugs if you will had gotten all of the swelling and buildup of fluid that it could stand and it all released at that time..It sure did feel tons better after that and it did it again about 3 days later and that was it, that was the pressure and pain I felt after surgery. The rest was a cake walk......I forgot to mention that and I do hope you read this also.....Clift
  • Shayenne
    Shayenne Member Posts: 2,342
    #9
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    Buzzard said:

    Anytime Bud...adding
    that also while I was healing there were fluids that built up causing severe pains in my tail area. They did leave a few small "drainage" openings there to allow it to drain, The pain got almost unbearable one day and I squatted to pick something up and it felt as though I had peed in my pants. What happened is my drain plugs if you will had gotten all of the swelling and buildup of fluid that it could stand and it all released at that time..It sure did feel tons better after that and it did it again about 3 days later and that was it, that was the pressure and pain I felt after surgery. The rest was a cake walk......I forgot to mention that and I do hope you read this also.....Clift

    I...
    ....have a temporary colostomy, and got it in March, and honestly, I still have those "phantom" feelings as Clift said, and asked the dr about it, who said it was normal. I've never had any kind of drainage or anything come out of there, but I will say I once passed gas through it, besides in my bag, and it nearly scared the heck out of me, as I thought I couldn't do that, and thought my colostomy was breaking LOL.. but that was supposed to be normal as well! who knew! strange eh?

    Hugsss!
    ~Donna
  • heatheruk2910
    heatheruk2910 Member Posts: 1
    #10
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    Urge to move bowels that no longer exist.
    Hi. I had a colostomy just over 2 yeas ago and can asure you that these urges do get less and less as time goes on. I still have to pass mucous about once every 3 weeks as I still have an anal stump, but find that just by sitting on the toilet for a couple of minutes makes it happen natuarally. I no longer feel the urge to push. Hope this helps........Heather

    Sorry, new on here. This post was in reply to Steve's question.
  • Shayenne
    Shayenne Member Posts: 2,342
    #11
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    heatheruk2910 said:

    Urge to move bowels that no longer exist.
    Hi. I had a colostomy just over 2 yeas ago and can asure you that these urges do get less and less as time goes on. I still have to pass mucous about once every 3 weeks as I still have an anal stump, but find that just by sitting on the toilet for a couple of minutes makes it happen natuarally. I no longer feel the urge to push. Hope this helps........Heather

    Sorry, new on here. This post was in reply to Steve's question.

    Hi Heather :)
    It's nice to meet you here, welcome to the family, and hope to see you post more :)

    Hugsss!
    ~Donna

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