Facing a permanent Colostomy

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Katie in Pensacola
Katie in Pensacola Member Posts: 5
edited March 2014 in Colorectal Cancer #1
I am 51, I was dignosed with rectal cancer 2 years ago. I opted for a non-invasive procedure that I thought would get rid of the cancer. I did radiation and chemo, and 2 years later, its back, same place. I am faced with total rectal removal and permanent colostomy next week. What is it like? Are there alternatives? Can I avoid the colostomy? Does anyone know? I'm terrified.

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  • cowman
    cowman Member Posts: 61
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    Same Boat Sorta
    Hi Katie,

    My husband is 51 also and is doing the colostomy thing next week just as you are. He just had his pre-surgery visit and had a good discussion with the ostomy nurse on what will happen and how it all works. Have you talked with a nurse? It helped us alot. Hubby did the chemo-radiation before surgery and will have more after. This is not something to take lightly and if it has returned and dr tells you you need the colostomy, then DO IT. It seems like most people say - it's NOT that bad. We have to take their word for it and gut our way through it, in a sense! You can do it. I will be thinking of you and saying a prayer for you along with my guy. I'm sure you will hear from some veterans colostomites? soon. Take Care.
  • karguy
    karguy Member Posts: 1,020 Member
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    Colosomy
    There is no reason to be terrified,I have a permanant colostomy,with a total rectal removal,and it is no big deal.It becomes part of your routine every day.And you can still do everything you did before.You have to get used to it,and after you do,it's kind of convienient.What I wasn't told about was that the radiation made me sterile,and that sometimes the stitches break open in back ,and you have to let it heal while it drains.It took me about 4 months to heal.When you have your surgey done,or before,see a colostomy nurse,that will help you alot.I hope this helps.
  • Buzzard
    Buzzard Member Posts: 3,043 Member
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    karguy said:

    Colosomy
    There is no reason to be terrified,I have a permanant colostomy,with a total rectal removal,and it is no big deal.It becomes part of your routine every day.And you can still do everything you did before.You have to get used to it,and after you do,it's kind of convienient.What I wasn't told about was that the radiation made me sterile,and that sometimes the stitches break open in back ,and you have to let it heal while it drains.It took me about 4 months to heal.When you have your surgey done,or before,see a colostomy nurse,that will help you alot.I hope this helps.

    All that and a bag of PooP......
    Have you heard the old saying "All that and a bag of Chips"...well my onc nurse told me that I was all that and a bag of poop.....Its simply what you make of it. Yes it sucks but it is pretty easy to negotiate around and it sure beats the alternative. I have found some great care products that allow me the freedom to do whatever I please. I too had total rectal removal with my backside sewn shut. My colostomy has never been a problem to me and colonoscopies are now a piece of cake...No sore tail....I eat what I want, and I do what I want. I have no restrictions other than now I can fish all day without having to go to the bank for a potty break..........Life is Great.....Trust me, for a man that is very outdoorsy and fishes and hunts all the time, the ostomy is a piece of cake.....
  • taraHK
    taraHK Member Posts: 1,952 Member
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    my experience
    These days many surgeons try "sphincter-sparing" surgical procedures. However, for some patients, rectal removal and permanent colostomy is unavoidable. I was one of those! There is no need to be terrified. It is an adjustment (both physically and emotionally). Consulting with an ostomy nurse -- before and after the surgery -- is very important. But, there are a lot of good products out there, and soon it will be a mindless part of your daily routine. I continue to do all the activities I did before (hiking, swimming, jacuzzi). I can wear most of the clothes I wore before (and I'm too old for a bikini now anyway!). Excuse me raising a delicate subject but sexual intimacy is also completely possible and fine -- with an understanding partner and the right attitude. It is natural to feel nervous about this big change but in the end it is just the way you poop and can be "no big deal". I wish you all the best.

    Tara
  • Jimbob-
    Jimbob- Member Posts: 46
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    taraHK said:

    my experience
    These days many surgeons try "sphincter-sparing" surgical procedures. However, for some patients, rectal removal and permanent colostomy is unavoidable. I was one of those! There is no need to be terrified. It is an adjustment (both physically and emotionally). Consulting with an ostomy nurse -- before and after the surgery -- is very important. But, there are a lot of good products out there, and soon it will be a mindless part of your daily routine. I continue to do all the activities I did before (hiking, swimming, jacuzzi). I can wear most of the clothes I wore before (and I'm too old for a bikini now anyway!). Excuse me raising a delicate subject but sexual intimacy is also completely possible and fine -- with an understanding partner and the right attitude. It is natural to feel nervous about this big change but in the end it is just the way you poop and can be "no big deal". I wish you all the best.

    Tara

    I have a Colostomy and Live in Pensacola.
    Hello Katie;

    I see you are in Pensacola, I am also in Pensacola, live in the Scenic Heights Area.

    In 2005 I was diagnosed with Colorectalcancer. The result was that It was necessary to remove the rectum and i am now the proud Owner of a permanent colostomy.

    I am also Vice President of our local Ostomy Group which meets at Baptist Hospital the First Monday of each month.

    Also let em refer you to the United Ostomy Association of America Website at www.uoaa.org and browse through the discussion board.

    Additionally if you click on my name I believe it will give you a link to my Email Address. I would be more than happy to meet with you and your caregiver/s.

    Know that you are not alone in this battle.

    Jimbob
  • Jimbob-
    Jimbob- Member Posts: 46
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    Jimbob- said:

    I have a Colostomy and Live in Pensacola.
    Hello Katie;

    I see you are in Pensacola, I am also in Pensacola, live in the Scenic Heights Area.

    In 2005 I was diagnosed with Colorectalcancer. The result was that It was necessary to remove the rectum and i am now the proud Owner of a permanent colostomy.

    I am also Vice President of our local Ostomy Group which meets at Baptist Hospital the First Monday of each month.

    Also let em refer you to the United Ostomy Association of America Website at www.uoaa.org and browse through the discussion board.

    Additionally if you click on my name I believe it will give you a link to my Email Address. I would be more than happy to meet with you and your caregiver/s.

    Know that you are not alone in this battle.

    Jimbob

    Contact.
    I think I misspoke about the link. if you wish to talk we can meet at some place and time of your choosing......I will watch this link.....

    Jimbob
  • menright
    menright Member Posts: 256 Member
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    permanent colostomy
    I had surgery in April and now have dealt with the colostomy for 5-months. My suggestion to you is make every effort to avoid a permanent colostomy. It is not absolutely terrible, but I wish I would have made more of an effort to search out alternatives. If anything, if you end up with one, you know you tried your best to avoid.

    Good luck.

    Mike
  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
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    Hi Katie,my husband just got
    Hi Katie,my husband just got one,he is still at the learning phase,so he doesn't like it and he is pretty sensitive with it.I think this is all at the beginning,with time,things will get better.Please understand that being cancer free and being alive are more important than anything else.I told my husband that having a pouch doesn't make him less than a person,and he is supposed to be happy that he is still sitting with his wife at the dinner table.Good luck and best wishes to you with your surgery.
  • Shayenne
    Shayenne Member Posts: 2,342
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    Hi Katie,my husband just got
    Hi Katie,my husband just got one,he is still at the learning phase,so he doesn't like it and he is pretty sensitive with it.I think this is all at the beginning,with time,things will get better.Please understand that being cancer free and being alive are more important than anything else.I told my husband that having a pouch doesn't make him less than a person,and he is supposed to be happy that he is still sitting with his wife at the dinner table.Good luck and best wishes to you with your surgery.

    Hi Katie!
    I have a temporary colostomy, and found it to be not that bad, honestly, it's just another way to do your #2! No wiping of the butt, no hemorrhoids, no bleeding from the rectum, no trying to squeeze a golf ball out of your butt, it actually looks like lips on your side, and is something that can be an ugly job, but it saves your life!

    I think meeting an ostomy nurse would be very helpful to you, they will show you how to do it, I was very accepting of it, and now it's just another part of daily routine also, you get faster changing it as you learn as well, it's really not that bad, alot of people hate it, but I have no problems with it.

    Good luck with it, and hope you just relax about it, and maybe watch a video that hospital may have on it, they showed me a dvd on it, and what to expect.

    Hugsss!
    ~Donna