Helping husband come to terms with colostomy

betula Member Posts: 86

Hi there,

My husband just had his surgery for stage 2 rectal cancer and due to it's low location he now has a permanent colostomy.  After having the teaching from the colostomy team I feel that it will be something that will be fairly easy to adjust to.....easy for me to say, I know! 

To those of you who have experienced this, what is the best way to support him in this journey.  I have been very postivie about it while not trying to minimize the adjustment for him.  He mentioned to his brother that "I seem to be the only one who hasn't been able to get over this yet".  He is only three days out of surgery so I know this will take a while but want to know what to expect.  I assume his process will almost be like grieving....depression, anger, etc.  before coming to acceptance. 

Thank you for any experience you can share,





  • Tunadog
    Tunadog Member Posts: 235 Member
    edited April 2017 #2
    I've had a colostomy since 12/30/15...

    I have found that the right bag helps. I'm using a convex type where it attaches and works well for me. The vendors will send you samples, keep looking until you find the right one.

    Get some scissors designed to cut the hole in the bag (they are curved with no sharp points)

    Once he gets used to changing the bag then you need to focus on how much and how often he eats.

    He'll shoud adjust quickly.

    Wish you both good luck.

  • lp1964
    lp1964 Member Posts: 1,239 Member
    edited April 2017 #3
    Dear Friend.

    I had the same cancer and treatment as he did 4 years ago. He has to be patient. It will take up to a year for this to feel natural. You have to try different products to find the perfect one. You have to avoid eating food with a lot of fiber and spice. Go to for more info. 

    I do a few new things that make it possible for me to feel comfortable. When you are ready to know more you can private message me.

    its hard to see it now, but in a few months he will be in much better shape. I'm comfortable, work, travel, date, be intimate and the colostomy is just a little inconvenience in my life.

    All the best,


  • betula
    betula Member Posts: 86
    Thank you both for your

    Thank you both for your replies. 



  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    I have an illeostemy, not a

    I have an illeostemy, not a colonostemy, so mine is different and isn't permanent. But I felt horrible about it at first and I remember crying to my husband and saying I looked like Frankenstein. The first time the bag had to be changed at home he did it for my while I cried. The second time I did it myself and have continued to do so. I loathed it for the first year. I felt different and freakish. Then I got used to it and realized that it was better than the IBS I'd always had. Now I have chosen not to have it reversed. I can but I'm not going to. Life is easier with it than it would be without it.

    I'm not sure there's anything you can do to help. Just act like it's no big deal and never make him think you're upset by it. It's his new reality and it's helping save his life. We are lucky to have this option as part of treatment and coping with this cancer. I suspect I'd have had a harder time if I knew mine was permanent and I had no choice. Possibly knowing I could have it reversed has helped. The fact that he had no choice could be part of it. And I suspect men feel like it's somewhat emasculating. Or a visible indication of how vulnerable they (and we all) are. Men like to be tough, the bag looks like a weakness, something like that.

    He'll learn to deal with it eventually, I hope. I joke about mine now. I joke about how I never pass wind and how I carry around a bag of my onw stomach contents. Kind of gross but whatever. If people are offended they can just suck it up. I'm the one who has to live with it. I'm trying to make it a normal thing and not something creepy. I hate people feeling badly for me so I try to make the whole cancer thing be just something that I deal with, not the big, scary C word that makes people scared to get checked out in case they have it.

    Anyways, I hope you're able to help your husband come to terms with a reality that many people have also had to deal with. I was also scared of mine at first. Could I ride my horse? Could I wear certain clothes? It made me feel vulnerable. I've found that I can do anything I want and I wear looser tops to hide it in case it puffs up. I don't know where the colostemy sits so that may not be an issue. I have a friend that has a colostemy and I'd never have known if she hadn't told me.

    Good luck!


  • swood9008
    swood9008 Member Posts: 116 Member
    edited May 2017 #6
    My mom

    My mom

    is headed in Tuesday for the same surgery, she has the same thoughts as your husband. We just reassure her it will be ok and we will be there every step of the way. 

  • bj12651
    bj12651 Member Posts: 5
    Wishing you all the best

     Had stage two colorectal cancer. I  had  an illeostemy for about 7 weeks waiting for my second surgery, the reversal. I can honestly say it was not that bad but I had a cancerous tumor and was told by my cancer doctor to prepare for a colostomy because of where the tumor was sitting.  I had a great surgeon. Was told he was one of the best in this state. He told me we are going for a cure and after five weeks of chemo and radiation my tumor did shrink enough to wear they were able to do a reversal. I just wanted them to get rid of the cancer.... I could of dealt with the Illeostemy or colostomy. I wish him the best. Prayers going out to you both.

  • Helen321
    Helen321 Member Posts: 1,459 Member
    edited June 2017 #8
    I'm now 4 years out and have

    I'm now 4 years out and have good days and bad. I'm afraid it d oesnt really get easier over time at least for me. I'm 47 now and pretty mad that this is my body some days. You just have to take the good days with the bad days and keep on going. Some days I forget I have it, some days I hate it. I use a two piece opaque system and that changed a lot from those ridiculous  see through bags. Who wants to look at look all day. Use opaque bags and if your insurance covers it, use a two piece. That lessened my anger a lot. He'll be fine in time because He'll realize that bad days are just normal like any other disability.  I still have some depression. It happens. I just remind myself I'm alive, tomorrow will be a better day and most days it is and the cycle continues. I try to find something to distract myself and on "blowout days" I make sure so always have extra bags and clothes. It stinks to high heaven so I don't use work bathrooms, I find an empty room, go in there and quickly shut the door when I'm done. I have to laugh at how ridiculous living with this bag is sometimes.