"The BAG"

Varmint5
Varmint5 Member Posts: 384 Member
in Colorectal Cancer #1
I recently read something on here about being a "clean person" vs someone who has "a bag." It has stuck in my craw and I want to respond to that line of thinking. I am a clean person, too. And I am an RN, was the ostomy nurse for the home health/hospice agency I worked for for years. And I am the mother of a 33-year-old woman who is a colon cancer survivor, still battling, who has a colostomy.

This is what I want to say: there is nothing about having an ostomy that makes a person "dirty" in any way, unless they were "dirty" (not bathing, B.O., bad hygiene, don't brush their teeth) to begin with. The majority of the patients I've worked with over the years with ostomies were not "dirty" people. And my daughter is one of the most hygienic, well-groomed people I know. She would be mortified if she came on this COLON CANCER SUPPORT forum to find someone suggesting that a colon cancer patient with an ostomy is seen as "unclean" and needs his/her own bathroom to deal with THE BAG. An ostomy is no "dirtier" than an a$$hole - and EVERYBODY has one or the other. And EVERYBODY poops.

My daughter learned early on how to live with her ostomy and we don't even think about it. Her husband helped her with it from the start. He is also "clean." And he still finds her sexy, attractive, desirable, and tells her so.

So... I think people who don't have ostomies and think they are nasty or are bothered by the fact that somebody has one need to keep that thinking off this forum. I apologize if this sounds confrontational. It's hard enough for a person dealing with colon cancer to face the reality of an ostomy and associated changes. This should be a place of SUPPORT, not the opposite.

Off my soapbox now.

Sandy

Comments

  • k44454445
    k44454445 Member Posts: 494
    #2
    Sandy
    unless i missed a post, i do not remember reading anything about a clean person vs someone who has a bag, in reference to an ostomy/colostomy. i have read where someone is clean meaning they are ned. do you remember when you read about that? i would like to read that post/posts so let me know. i joined in july 2012 & have not read anything offensive. best of luck to your daughter.
    hugs
    judy
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #3
    Dear Sandy
    You go girl! Thank you for taking up this issue for me and all others who have an ostomy.

    I must have missed the post you are referring to because I would have been right there with you on what you have to say.

    It is difficult enough for those new to an ostomy to become comfortable with this change without worrying that they are somehow offending others.

    For anyone having issues with their ostomy, they just need to ask either here or their ostomy nurse to get help.

    Thanks again for setting the record straight!

    Hugs,

    Marie who loves kitties
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #4
    Hate that Phrase
    Actually people that have had "the bag" don't refer to it as that but "gift of life" or "pouch" but know where you are coming from. Never did my situation give me a dirty feeling unless the bag leaked, of course it did, and then that was a totally different story. Thank you for being the person that you are and your SIL for loving her unconditional and finding her sexy and all. My husband too still found me sexy but it was me that didn't feel that way but because of radiation that part of sexual intimacy was lost due to that (vagina closed up). Got it back though and we are doing good now, but I've had a reversal but that didn't stop my husband from loving me no matter what even when having a ileostomy. Sometimes now because I'm tied to the bathroom at times, I've thought about having it reversed. I just know that I've got one year to make a decision on whether my 15 trips to the bathroom a day will be ok for the rest of my life or if I'll ask my surgeon next year to reverse my reversal. After Obamacare kicks in I'll have no choice and my decision will be taken away because HE won't allow such a reversal. I've thought about a reversal much lately and now I'm under pressure. Thanks for such an inspirational post.

    Kim
  • Dyanclark
    Dyanclark Member Posts: 296
    #5
    Clean
    I guess I said things wrong, I mean I am clean and there is nothing that bothers me about my husbands bag. He has always had his own bathroom, but now he would prefer to take care of himself in private. In the beginning I had to help clean things up and it didnt bother me in the least and I never got freaked out. I let him have his private bathroom because he wants it that way.
    I dont think you are fair in finding fault with my comment, so I doubt I will ever comment here again. I will just read comments.
    I think we should encourage each other not find fault.
  • steved
    steved Member Posts: 834 Member
    #6
    'clean'
    This is a remarkably sensitive topic because it touches on people's sense of identity. Those of us with bags (I have two for life) struggle with how it will affect the way people see us. Will we seen as dirty, unclean, unsexy etc. in truth this is rarely the case and time allows us to accept that but it does remain a sensitive subject.

    Have retread the the initial post and see nothing truly offensive there but accept it could be read in a way it was never intended to be. Dylan's comments were well meant for Lou and his bathroom issues and certainly not a comment about people with stomas being unclean. I am pleased it has raised this discussion but would be saddened if it mean Dyan felt unable to post further as her comments are valued.

    A simple case of misinterpretation that isn't uncommon here when we are discussin such intimate, personal and difficult topics.

    Let's continue to discuss this but accept nobody here meant offence within any of their posts,

    Steve
  • Varmint5
    Varmint5 Member Posts: 384 Member
    #7
    Dyanclark said:

    Clean
    I guess I said things wrong, I mean I am clean and there is nothing that bothers me about my husbands bag. He has always had his own bathroom, but now he would prefer to take care of himself in private. In the beginning I had to help clean things up and it didnt bother me in the least and I never got freaked out. I let him have his private bathroom because he wants it that way.
    I dont think you are fair in finding fault with my comment, so I doubt I will ever comment here again. I will just read comments.
    I think we should encourage each other not find fault.

    Hi Dyan
    I really thought (hoped) that was what you probably meant but the way you said it hit me in a very sensitive area. My focus is for my daughter to survive this - and to help her feel good about herself now that she is "sick," which she has never been in her life. One of my daughter's friends showed up at my door with a bunch of baggy clothes she wanted to get rid of and whispered they were for my daughter, to hide THE BAG. It is a sensitive subject and I just want people to know that. Thanks for clearing that up. I'm sorry you don't think it was "fair." I didn't think what you said was fair. I hope you don't stop posting because of this. And I agree that we should encourage each other - you are a caregiver, just as I am. We need to be here for ourselves and others.

    Sandy
  • Varmint5
    Varmint5 Member Posts: 384 Member
    #8
    Thanks for the responses
    Wish I had time to write more but I am off to work. I'm glad to know people understand what I was saying. Have a good day, everybody.

    Sandy
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #9
    Dyanclark said:

    Clean
    I guess I said things wrong, I mean I am clean and there is nothing that bothers me about my husbands bag. He has always had his own bathroom, but now he would prefer to take care of himself in private. In the beginning I had to help clean things up and it didnt bother me in the least and I never got freaked out. I let him have his private bathroom because he wants it that way.
    I dont think you are fair in finding fault with my comment, so I doubt I will ever comment here again. I will just read comments.
    I think we should encourage each other not find fault.

    Glad it wasn't your intent to offend

    Just as you didn't realize this might be taken differently than you intended, others reading your first post had no way of knowing the details you just shared.

    Having the outward appearance of your body changed in this way is definately an emotional experience as well as a physical one, and there are people in this world who do have a negative response to a person having an ostomy.

    We all risk our typed words being taken differently than intented when we post. The important thing is to clarify misunderstandings, which you did. To stop posting because of the misunderstanding would be a shame.

    Marie who loves kitties
  • Dyanclark
    Dyanclark Member Posts: 296
    #10
    Varmint5 said:

    Hi Dyan
    I really thought (hoped) that was what you probably meant but the way you said it hit me in a very sensitive area. My focus is for my daughter to survive this - and to help her feel good about herself now that she is "sick," which she has never been in her life. One of my daughter's friends showed up at my door with a bunch of baggy clothes she wanted to get rid of and whispered they were for my daughter, to hide THE BAG. It is a sensitive subject and I just want people to know that. Thanks for clearing that up. I'm sorry you don't think it was "fair." I didn't think what you said was fair. I hope you don't stop posting because of this. And I agree that we should encourage each other - you are a caregiver, just as I am. We need to be here for ourselves and others.

    Sandy

    So kind
    Thank you so much, I am at times overwhelmed also. We still try to have fun in between all the Doctors & treatment. We got to go to beach in Calif to see kids last week. My husband is doing two Avastin treatments to see if CEA will come down at 6.3 now, but all scans are clear.
    I hope so much things go well for your daughter, horrible to see our kids with health problems.
  • Dyanclark
    Dyanclark Member Posts: 296
    #11
    steved said:

    'clean'
    This is a remarkably sensitive topic because it touches on people's sense of identity. Those of us with bags (I have two for life) struggle with how it will affect the way people see us. Will we seen as dirty, unclean, unsexy etc. in truth this is rarely the case and time allows us to accept that but it does remain a sensitive subject.

    Have retread the the initial post and see nothing truly offensive there but accept it could be read in a way it was never intended to be. Dylan's comments were well meant for Lou and his bathroom issues and certainly not a comment about people with stomas being unclean. I am pleased it has raised this discussion but would be saddened if it mean Dyan felt unable to post further as her comments are valued.

    A simple case of misinterpretation that isn't uncommon here when we are discussin such intimate, personal and difficult topics.

    Let's continue to discuss this but accept nobody here meant offence within any of their posts,

    Steve

    Thanks again
    We dont let the bag affect our sex life, going to dinner with friends, trips or things we enjoy. My husband feels so much better with the bag and he is gaining weight what could be better then that.
  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #12
    Varmint5 said:

    Thanks for the responses
    Wish I had time to write more but I am off to work. I'm glad to know people understand what I was saying. Have a good day, everybody.

    Sandy

    My husband has his life back
    My husband has his life back since getting the bag. Sadly enough, it may be the best thing to happen to him. He can eat whatever he wants. Doesn't have to worry about diarrhea and constipation. I don't think of him any differently. It's been a very positive change for us. (Could do without the stage 4 cancer that came with it, though)!
  • childofGod_tx
    childofGod_tx Member Posts: 10
    #13
    Chelsea71 said:

    My husband has his life back
    My husband has his life back since getting the bag. Sadly enough, it may be the best thing to happen to him. He can eat whatever he wants. Doesn't have to worry about diarrhea and constipation. I don't think of him any differently. It's been a very positive change for us. (Could do without the stage 4 cancer that came with it, though)!

    Today I went to remove my
    Today I went to remove my staples out and I told my surgeon how much respect I have now on ostomates which, had I not been in this position, would never even hv known...I am humbled by your courage and skills to manage it. I am a very clumsy person and unable to change without the helpof an ostomy nurse, so I am pushing my surgeon to reverse it asap. However, I had to tell you I think all of you have lived life with an appliance and are living with it, you are such heroes in my eyes. Thank you for inspiring me everyday.

    May God bless each one of you.
  • Dyanclark
    Dyanclark Member Posts: 296
    #14
    childofGod_tx said:

    Today I went to remove my
    Today I went to remove my staples out and I told my surgeon how much respect I have now on ostomates which, had I not been in this position, would never even hv known...I am humbled by your courage and skills to manage it. I am a very clumsy person and unable to change without the helpof an ostomy nurse, so I am pushing my surgeon to reverse it asap. However, I had to tell you I think all of you have lived life with an appliance and are living with it, you are such heroes in my eyes. Thank you for inspiring me everyday.

    May God bless each one of you.

    Bag
    Well I will say it took about four weeks of Nurses visits 2 times a week until my husband got that bag change right. I also order from liberator and they always offer great advise send samples & such which help a lot. Hereo is the word, it has been a life saver for my husband I just hope we can see an end to his cancer.

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