Need Info About Colostomy

BWK
BWK Member Posts: 23
edited March 2014 in Colorectal Cancer #1
If you've had a colostomy can you give me any help on information I should know before we head down this path? My husband has recurrent anal cancer and we meet with the doctor tomorrow about his options. Everything I read points to APR with permanent colostomy. Just trying to gather facts.

Thanks,
Barbara
(for Richard)

Comments

  • Buzzard
    Buzzard Member Posts: 3,043 Member
    Yep..got one...and its a piece of cake
    I will go into detail in a little bit but what all do ya want to know ? most likely everything...I will step it out from my point of view and others have their own as well. It is to me a lot easier than I thought. It certainly makes colonoscopies a breeze...I still eat what I want and have a preference to what prosthetic I use (yes, an ostomy bag is known as a prothesis).Yep, surprised me as well, but there are a few tricks and a few options along with ostomys that you can do such as irrigation, kind of like a self induced enema, or just let it happen as it may (which is the route I take)..no fuss no muss...its part of me now....and it also serves as a neat fanny pack if you go on vacation...(it makes the pennies shine real bright)..Naw really it is as simple as you want to make it. The hardest thing about it is the mental side....as old as I am though it is kinda like a Christmas tree ornament...anything to dress me up is a plus.......ask away and I and others will answer all we can......Love to you and yours..........Buzz
  • BWK
    BWK Member Posts: 23
    Buzzard said:

    Yep..got one...and its a piece of cake
    I will go into detail in a little bit but what all do ya want to know ? most likely everything...I will step it out from my point of view and others have their own as well. It is to me a lot easier than I thought. It certainly makes colonoscopies a breeze...I still eat what I want and have a preference to what prosthetic I use (yes, an ostomy bag is known as a prothesis).Yep, surprised me as well, but there are a few tricks and a few options along with ostomys that you can do such as irrigation, kind of like a self induced enema, or just let it happen as it may (which is the route I take)..no fuss no muss...its part of me now....and it also serves as a neat fanny pack if you go on vacation...(it makes the pennies shine real bright)..Naw really it is as simple as you want to make it. The hardest thing about it is the mental side....as old as I am though it is kinda like a Christmas tree ornament...anything to dress me up is a plus.......ask away and I and others will answer all we can......Love to you and yours..........Buzz

    Thanks!
    Buzz, thanks for this info. Makes me feel much better. My husband has a friend who also does very well with his. I may pick your brain more as we go along. Thanks again.
  • wmcbane
    wmcbane Member Posts: 33
    I have an ileostomy and it's manageable
    Getting used to the idea of it was not easy, and the first week or so post-surgery was rough. The pouch kept failing every day, and I kept having to replace it when I was hardly strong enough to stay on my feet long enough to get it done. But after I went back to ostomy nurse and got a 2-piece (vs 1 piece) ostomy bag, that problem resolved itself. Home health nurses also helped me work though a few issues. It just takes some time, practice and support to get it down.

    Now, as I said, it's manageable. I don't have a husband/boyfriend. I think intimacy would be a hurdle, but I'm sure couples get over it.

    Given the problems some people seem to have after a reversal, I'm going to think seriously about going down that road vs. making mine permanent.

    Good luck to you both.
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    My Experience
    I had my colostomy in March of this year. I was apprehensive about it when the surgeon said that was what needed to be done. He sent me to an ostomy nurse at the local hospital for 'education and training'. One of the best things was a book she loaned me about living with an ostomy. The other thing that she did a few days before surgery was to 'mark me' for the best location for the ostomy...to keep it below the belt line, a place relatively smooth, and a few other things important to the sucess.

    It was a bit daunting at first trying to get the hang of it and researching all the various supplies available, but once you get past that, it has been no problem.

    If there is anything I can answer for you or your hubby, please ask.

    Best of luck

    Marie
  • Buzzard
    Buzzard Member Posts: 3,043 Member

    My Experience
    I had my colostomy in March of this year. I was apprehensive about it when the surgeon said that was what needed to be done. He sent me to an ostomy nurse at the local hospital for 'education and training'. One of the best things was a book she loaned me about living with an ostomy. The other thing that she did a few days before surgery was to 'mark me' for the best location for the ostomy...to keep it below the belt line, a place relatively smooth, and a few other things important to the sucess.

    It was a bit daunting at first trying to get the hang of it and researching all the various supplies available, but once you get past that, it has been no problem.

    If there is anything I can answer for you or your hubby, please ask.

    Best of luck

    Marie

    another thing...........
    there is no fart control other than keeping a hand close by to muffle the sound.....see, we ask and tell everything in here.......my wife tells me that a kuzoo would be a nice addition...I think shes serious......gotta laugh....its all in the bag.....Love ya, Buzz
  • karguy
    karguy Member Posts: 1,020 Member
    Colostomy
    I've had a bag for 2yrs.,when the ostomy nurse marks the spot for the stoma,try to get it as low as possible,that way you can wear it underyour pants,below your belt.It makes it easier to wear.It becomes part of the daily routine,and sometimes it's more convenient,you don't have to run to the bathroom as much,but there is no fart control like was said,you have to get used to that,and when you empty the bag,stand over the toilet,you have no control over whem it comes out.Good luck.
  • Crow71
    Crow71 Member Posts: 679 Member
    Hey Barbara - I had a
    Hey Barbara - I had a colostomy from August '09 until April '10. In April the surgeon switched mine to a ileostomy.
    Marie brought up the ostomy nurse. My ostomy nurse is awesome. She's been with me every step of the way from marking me before surgery to figuring out what appliance works best for me. I hope your nurse is as good as mine. She told me at the beginning, "The day will come when your ostomy is not the first thing you think about in the morning." She was right.

    It takes some getting use to, and it can be aggravating at times. Chemo and surgery have held me back from doing things that I want to do; my ostomy has not.

    take care - Roger
  • Crow71
    Crow71 Member Posts: 679 Member
    Buzzard said:

    another thing...........
    there is no fart control other than keeping a hand close by to muffle the sound.....see, we ask and tell everything in here.......my wife tells me that a kuzoo would be a nice addition...I think shes serious......gotta laugh....its all in the bag.....Love ya, Buzz

    Hey Buzz - I had fart
    Hey Buzz - I had fart control when I had my colostomy. I couldn't stop it, but when it started I could push it out louder by flexing my abs. I could also play it like a one valve trumpet. My ileo doesn't fart. It just constantly drips. Not as much fun.
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Ileostomy
    Had an ileostomy after having rectal cancer and although it was an adjustment, my reversal (going back to a "made" rectum), sometimes my thoughts about whether it was a good choice to go back to "normal" comes to mind while visiting the toilet several times a day. It will become a new normal and one that you can definitely live with, one that is easy to maintain and no one needs to know. We have 8 kids and only 2 knew of it while having the ileostomy. You can choose to tell or not tell. Other than the colostomy, hoping your husband will have good results on his surgery and any treatment ahead.

    Kim
  • coloCan
    coloCan Member Posts: 1,944 Member
    Crow71 said:

    Hey Barbara - I had a
    Hey Barbara - I had a colostomy from August '09 until April '10. In April the surgeon switched mine to a ileostomy.
    Marie brought up the ostomy nurse. My ostomy nurse is awesome. She's been with me every step of the way from marking me before surgery to figuring out what appliance works best for me. I hope your nurse is as good as mine. She told me at the beginning, "The day will come when your ostomy is not the first thing you think about in the morning." She was right.

    It takes some getting use to, and it can be aggravating at times. Chemo and surgery have held me back from doing things that I want to do; my ostomy has not.

    take care - Roger

    Welcoming your husband to the ranks of us colostamates...
    Your edge over me is finding this site prior to surgery; I found it a month after .Ask anything and the answer comes from experience. My colostomy was eleven months ago;you get used to it, accept it and after postop chemo you gradually get on with your life......steve
  • taraHK
    taraHK Member Posts: 1,952 Member
    marking before surgery
    Wel;, no-one wants a permanent colostomy -- and most surgeons will try to avoid if possible. But if it is the best/only option for saving your life, then you get one! I've had a colostomy for over 7 years. There is some initial adjustment (psychological and practical) but I can honestly say it is FINE now -- you get into a routine, and it can be no big deal. I continue to be active (swim, hike, hot-tub), wear pretty much anything I like, and no-one would know if I didn't tell them (and I generally don't!!).

    Things to consider before you get one: before surgery, you should meet with a stoma nurse. The pre-surgical marking is very important -- you want the surgeon to get the placement right.

    After surgery, the stoma nurse should talk you through everything. I advise checking out several different products (they often give you some free samples from different companies?) to find which one you like the best.

    Later on, you might want to ask about the possibility of irrigation. Not everyone can do this. I was told I probably couldn't because of presurgical radiation -- but I can and do. It makes a nice difference. Worth asking about. I couldn't start for several months after my surgery, because I was still having chemo....

    Good luck! Feel free to ask more questions

    Tara
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Buzzard said:

    another thing...........
    there is no fart control other than keeping a hand close by to muffle the sound.....see, we ask and tell everything in here.......my wife tells me that a kuzoo would be a nice addition...I think shes serious......gotta laugh....its all in the bag.....Love ya, Buzz

    Oh well...
    As to this subject, you will find that there are a number of foods and drinks which cause more gas than others...if they are on your favorites list, you might want to consume them at home!

    Seriously, life with a colostomy can be pretty much normal. Finding the routine and supplies that work for you is probably the hardest work.

    Someone mentioned concerns about intimate moments. They actually make a 'tummy wrap' sold at ostomy supply companies, which can be used to 'mask' the bag and keep it out of the way. There is much more out there to research, but again, if you need help...come here and we will try to give you answers from our experience.

    Marie
  • John23
    John23 Member Posts: 2,122 Member
    Barbara -


    Go here: United Ostomy Associations of America

    You can't find a better place for comprehensive information.

    Keep in mind, that these are real people, with varied opinions,
    but you'll get any question answered promptly.

    John
  • John23 said:

    Barbara -


    Go here: United Ostomy Associations of America

    You can't find a better place for comprehensive information.

    Keep in mind, that these are real people, with varied opinions,
    but you'll get any question answered promptly.

    John

    This comment has been removed by the Moderator
  • coolvdub
    coolvdub Member Posts: 408 Member
    unknown said:

    This comment has been removed by the Moderator

    Not the end of the world
    Tell your hubby that it will take some getting used to. But after a while it all goes smoothly. I am relatively new to this. I had to have a diversion colostomy, because of a fistula(fancy medical term for a hole) in my colon. I wasn't happy to hear I would have to have a colostomy, even if only temporary. But it hasn't stopped me from doing anything. I had a self image issue early on, but as some wise people on the UOAA website told me. People don't know you have one unless you tell them, they said to look at other people and see if I could tell who the other ostomates were, guess what I couldn't. Have your husband check out the UOAA website that John recommended, it really helped me.

    Don
  • Mathtutor234
    Mathtutor234 Member Posts: 16
    My first two months were difficult then it was much easier
    Hi,
    I had with one surgery a cancer reduction in my colo-rectal area and a colostomy put in. So I might have had more swelling than otherwise would have occurred. But in my case, my stomach was greatly swollen for around two months which complicated the colostomy situation. I had trouble getting the darned colostomy waiffers to stick, they would keep leaking. And I had liquid dirraehae for about the first month or so. But after the swelling went down and the waiffers fit like they were supposed to it got much easier. If the person in question has full use of both his/her hands changing the waiffer and bags isn't hard once you get used to it. It's more of a mental difficulty than a physical difficulty. I suggest using a colostomy powder especially on the bottom of the skin next to the stoma, then a ring of stoma paste on the underside of the hole cut into the waiffer, this will slow down the breakdown of the skin and flesh beneath the stoma-- the digestive juices that break down the meat that we eat will, if it leaks underneath the waiffer, eventually breakdown our flesh also. After about three years with a colostomy, I've lost about a dime size area of skin and some flesh underneath my stoma. You can also minimize this by cutting the hole in the waiffer fairly close to the size of the stoma, although this increases the risk of the waiffer cutting into the stoma if you do a hard twist or bend. You get to decide which risk to run. Good luck.
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member

    My Experience
    I had my colostomy in March of this year. I was apprehensive about it when the surgeon said that was what needed to be done. He sent me to an ostomy nurse at the local hospital for 'education and training'. One of the best things was a book she loaned me about living with an ostomy. The other thing that she did a few days before surgery was to 'mark me' for the best location for the ostomy...to keep it below the belt line, a place relatively smooth, and a few other things important to the sucess.

    It was a bit daunting at first trying to get the hang of it and researching all the various supplies available, but once you get past that, it has been no problem.

    If there is anything I can answer for you or your hubby, please ask.

    Best of luck

    Marie

    The name of the book
    Here is the name of the book I mentioned:

    “The Ostomy Book: Living Comfortably with Colostomies, Ileostomies, and Urostomies [Paperback] Barbara Dorr Mullen (Author), Kerry Anne McGinn RN BSN OCN (Author).”

    It is on-line at Amazon, or you can probably find it at any large book store.