disappointed....

Safewaychick
Safewaychick Member Posts: 15
in Colorectal Cancer #1

well since my last post mom was to be donning the surgery gown... but the doc wants mom to sign a waiver saying there is a 10% chance that she will end up with a bag, and mom won't sign b/c she just DOESNT WANT A BAG!!!!!! 'sigh' so mom is upset... as i am... i figured we could finally move on with this... 

as it is... now we are looking at more options! our fam doc thinks there may be a surgeon in toronto that could work out... 

still going home the weekend i'm excited and sad at the same time!

i just wish mom could see like meet face to face a younger person even my own age with a colostomy bag and see what its like, so she wouldn't be so against it.

i mean really its a bag!? whats a bag to having another 5 or 10 or 15 years of life ? 

i've even tried to get across that point, but she is just dead set against it... and she thinks the ukrainian are stubborn!!! take a look at the irish!!!!! 

 

i just don't get it...... maybe its being selfish... maybe not... 

Comments

  • luvinlife2
    luvinlife2 Member Posts: 172 Member
    #2
    Hi Safewaychick :)

    I think your Mom would have to sign a waiver prior to any type of surgery.  It's standard procedure here in BC so I can't see it being that different in Ontario.  Basically it allows the surgeon to take whatever measure deemed necessary at the time of the surgery in the event something else is discovered or occurs etc.  For example, during my colon resecton surgery my Dr. had to bring in another surgeon to do a hysterectomy because my tumor had spread throughout my female bits and pieces.  Had I not signed the waiver prior to surgery, he would have had to close me up with most of the tumor still intact.  I was warned about the possibility of a colostomy bag as well.   For me, that possibility was harder to deal with than dying.  Can you believe it?  It's a tough one but I think your Mom will come around.  10% is pretty good odds....that's a 90% chance of not having one.  Surgeons don't give out those kinds of odd lightly.  In my experience with surgeries, if a Dr. gives a 90% chance then he really means 100%, he's just covering his butt in the unlikely event something is not what he expects it to be.

    By the way, I didn't the colostomy although my surgeon told me I would probably need one.  Turned out he had enough of a clear margin to reconnect the colon.  The men and women that I know who do have them...well I was totally surprised to find out they did.  You can't tell at all.

    I think you are so sweet to love and care so much for your Mom :)  Don't worry too much, keep loving her and supporting her.  It sounds like she still needs to work this out in her mind and that's ok.  :)

  • John23
    John23 Member Posts: 2,122 Member
    #3
    Safewaychick –

     

    Take a read at this Forum:

    https://www.ostomy.org/forum/viewforum.php?f=2&sid=2dae80aabcf1c7702dc27568d6c1319e

     

    It’s the United Ostomy Association forum, and full of helpful info. Maybe printing out some of the comments, or having her read a few threads will allow her to see what the “bag” is all about.

     

    Personally, calling is a “bag” carries a stigma that makes any ostomate cringe. The industry calls it an appliance. The two-piece appliances consist of a wafer and a pouch. It’s sounds a lot nicer saying that you have to wear a pouch, rather than a bag.

     

    It’s important that the surgeon removes anything that does not look right, while he’s operating. Leaving what can come back as another cancerous tumor because the patient refuses to have an Ostomy, is not the best of scenarios. But your mom isn’t the only one that feels like that; there’s a terrible stigma attached to having to be disfigured, regardless of age or looks.

     

    Maybe that forum can help offset some of her fears? I hope so. Having an Ostomy isn’t all that much of a big deal.

     

    Best of hopes,

     

    John

     

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #4
    Bag

    So there's a 90% chance she won't have a bag, right? There are no guarantees anywhere. If she were to go to another surgeon who promised her no bag I'd be wary of them. No one knows what's going to happen.

    There was a slight chance I'd have a bag but the odds were that I wouldn't. When I woke up from surgery I checked. No bag. If it's a matter of living with a bag or dying of vanity the choice should be easy...

    Good luck

  • wawaju04976
    wawaju04976 Member Posts: 316 Member
    #5
    PhillieG said:

    Bag

    So there's a 90% chance she won't have a bag, right? There are no guarantees anywhere. If she were to go to another surgeon who promised her no bag I'd be wary of them. No one knows what's going to happen.

    There was a slight chance I'd have a bag but the odds were that I wouldn't. When I woke up from surgery I checked. No bag. If it's a matter of living with a bag or dying of vanity the choice should be easy...

    Good luck

    I woke up w/a colostomy,

    I woke up w/a colostomy, totally unexpected. It is temporary, but I will tell you I have adjusted. Once you get used to it, changing it, etc. it really isn't bad. Am I looking forward to having it reversed? Yes, but if I had to have it permanently, it wouldn't be the end of the world.

    Judy

  • coloCan
    coloCan Member Posts: 1,944 Member
    #6
    wawaju04976 said:

    I woke up w/a colostomy,

    I woke up w/a colostomy, totally unexpected. It is temporary, but I will tell you I have adjusted. Once you get used to it, changing it, etc. it really isn't bad. Am I looking forward to having it reversed? Yes, but if I had to have it permanently, it wouldn't be the end of the world.

    Judy

    Have bag,will live

    thats my bottom line.....

    (and it does have its advantages too)

  • Goldie1
    Goldie1 Member Posts: 264 Member
    #7
    Changed my husband's life....

    for the better!  Pat has had a permanent colostomy for over a year now and his quality of life has improved beyond what we could have hoped for.

    So, even if your Mom is getting ahead of the possibility of the need for an pouch (temporary or permanent) one day, it is still good for her to know all the facts.  Maybe her doc could set up something with an ostomy nurse to just get info on the procedure and care.  It may ease some of her fears.  

    All the best,

    Ellen

  • danker
    danker Member Posts: 1,276 Member
    #8
    Safewaychick

    When I had my resection I didn't want a bag either.  Woke up with an ileostomy and the need of a bag. . Had that for 6 weeks untill reversal of ileostomy. Developed a fistula requiring a bag for about 6 more weeks. Fistula healed itself from the inside out.  no more need for bags!!!

    Colonoscopy 6 months later showed NED. Have been NED ever since( almost two years) The bags were no fun, but they were doable!!! Good Luck

  • Varmint5
    Varmint5 Member Posts: 384 Member
    #9
    Ostomy

    My beautiful 32-year-old daughter went into surgery 7 weeks after giving birth specifically to "get a bag" - have a colostomy done so her colon would not rupture from blockage caused by the tumor. It ws a fairly easy adjustment and we - including her young husband - were all glad she got it and she functions just fine with it. She wears whatever she wants, eats whatever she wants, swims - it does not affect her lifestyle at all, nor her self-image. Of course, she would rather not have it. But that is not an option right now and she never, ever complains about having it. I agree with what has been posted above. I'm sorry she has such prejudice against ostomies. I don't know where this comes from but I know it exists. Good luck finding a doctor that will promise her no ostomy. You'll need it.

    Sandy

  • swordranch
    swordranch Member Posts: 35
    #10
    permanent

    I went into surgery knowing that I would have a pemanent colostomy.  I have to tell you that it has been an adjustment both emotionally and physically.  I was one of those few that they (well to put it bluntly) did a crappy job on and mine my have to be redone.  But would I do it again?...yes.  It saves lives and the people that have came out of the woodwork to tell me that they have either colostomies or illeostomies has been unbelievable because I did not have a clue!  And those that I knew about were older men that led me to believe that if they can deal, certainly I can!  I am 55 years old.  You did not say how old your mother was.  I hope that she comes around and has the best of luck with her surgery.  You may also tell her that at some point after chemo if she has to have it, she may be able to irrigate, in which case she will be able to give herself, basically, an enema that will last for a couple of days and will be able to get by with a cap instead of a full size appliance.  I look forward to the day that I can do this.

    Laura

  • luvinlife2
    luvinlife2 Member Posts: 172 Member
    #11
    swordranch said:

    permanent

    I went into surgery knowing that I would have a pemanent colostomy.  I have to tell you that it has been an adjustment both emotionally and physically.  I was one of those few that they (well to put it bluntly) did a crappy job on and mine my have to be redone.  But would I do it again?...yes.  It saves lives and the people that have came out of the woodwork to tell me that they have either colostomies or illeostomies has been unbelievable because I did not have a clue!  And those that I knew about were older men that led me to believe that if they can deal, certainly I can!  I am 55 years old.  You did not say how old your mother was.  I hope that she comes around and has the best of luck with her surgery.  You may also tell her that at some point after chemo if she has to have it, she may be able to irrigate, in which case she will be able to give herself, basically, an enema that will last for a couple of days and will be able to get by with a cap instead of a full size appliance.  I look forward to the day that I can do this.

    Laura

    Love that avatar Laura!!!

    Smile

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