anal and vaginal cancers together

mstwit
mstwit Member Posts: 8
edited March 2014 in Colorectal Cancer #1
I am undergoing treatment for both anal and vaginal cancer. Today will be my last day of radation and taking the chemo pill Xeloda. I have been told by my surgeon that I will have to wear a colostomy pouch for the rest of my life. I am a 75-year-old female, so while the colostomy pouch is not something I'm looking foward to, I will make the best of it. I live alone and I am scared. I have difficulty walking due to osteoarthritis in knees and must use a walker and/or cane. I am looking for someone to share experience with.

Comments

  • KathiM
    KathiM Member Posts: 8,028 Member
    #2
    you are not alone...you have us!
    I am a 54-year-old woman, no rectum or sigmoid colon thanks to the same type of cancer you are currently battling. I cannot speak to an ostomy bag, I had a special procedure that gave me a new rectum inside my body.

    The good news is that anal cancer is VERY responsive to chemo/radiation...and, as my 58-year-old sister who finished treatment 1 1/2 years ago for anal cancer, 'life is good, and returning to normal'.

    A couple of questions: Since you live alone, do you have 'life alert' or something like it? It's an emergency call system, my 86-year-old mom (double cancer survivor-endometrial and breast) has it since she, too chooses to live alone.

    Are you on any bone strenghtening drugs? I got osteoporosis from all the chemo during treatment for my cancers (rectal and breast). I take Actonel once a month...my bones are actually regenerating!

    Hugs, Kathi
  • kristasplace
    kristasplace Member Posts: 957 Member
    #3
    Ostomy bag
    Hello mstwit, and welcome to the board!

    I had a temporary ileostomy for fifteen months, so i can't speak to what it's like to have a permanent one. There are many on this board who do have a permanent one, and they all say it's something you get used to. I got used to mine in some ways, the only real drag was not being able to swim, which i love to do. If you get a colostomy, there are belts and other aparatus that will help you lead a more normal life.

    On the brightside of it, you never have to make emergency stops to find a toilet while traveling, and you won't have to worry about strictures from the surgery. When i first had my ostomy reversed, i had a horrible time with bowel movements. I still have some trouble because i have a stricture. Many times i wished i had a permanent bag! I could eat normally back then, and didn't have terrible abdominal cramping.

    Like Kathi, i got seriously bad osteoporosis from the radiation treatments. I get fractures in my lower back, sacrum and crack ribs all the time. Taking high doses of vitamin D and calcium helped a lot, along with fossamax.

    Please keep in touch with us to let us know how you're doing! This is the best support system in the world!!

    Hugs,
    Krista
  • mstwit
    mstwit Member Posts: 8
    #4
    kristasplace said:

    Ostomy bag
    Hello mstwit, and welcome to the board!

    I had a temporary ileostomy for fifteen months, so i can't speak to what it's like to have a permanent one. There are many on this board who do have a permanent one, and they all say it's something you get used to. I got used to mine in some ways, the only real drag was not being able to swim, which i love to do. If you get a colostomy, there are belts and other aparatus that will help you lead a more normal life.

    On the brightside of it, you never have to make emergency stops to find a toilet while traveling, and you won't have to worry about strictures from the surgery. When i first had my ostomy reversed, i had a horrible time with bowel movements. I still have some trouble because i have a stricture. Many times i wished i had a permanent bag! I could eat normally back then, and didn't have terrible abdominal cramping.

    Like Kathi, i got seriously bad osteoporosis from the radiation treatments. I get fractures in my lower back, sacrum and crack ribs all the time. Taking high doses of vitamin D and calcium helped a lot, along with fossamax.

    Please keep in touch with us to let us know how you're doing! This is the best support system in the world!!

    Hugs,
    Krista

    colostomy puch
    Thanks for your input. It gives me hope and a better outlook.
  • mstwit
    mstwit Member Posts: 8
    #5
    KathiM said:

    you are not alone...you have us!
    I am a 54-year-old woman, no rectum or sigmoid colon thanks to the same type of cancer you are currently battling. I cannot speak to an ostomy bag, I had a special procedure that gave me a new rectum inside my body.

    The good news is that anal cancer is VERY responsive to chemo/radiation...and, as my 58-year-old sister who finished treatment 1 1/2 years ago for anal cancer, 'life is good, and returning to normal'.

    A couple of questions: Since you live alone, do you have 'life alert' or something like it? It's an emergency call system, my 86-year-old mom (double cancer survivor-endometrial and breast) has it since she, too chooses to live alone.

    Are you on any bone strenghtening drugs? I got osteoporosis from all the chemo during treatment for my cancers (rectal and breast). I take Actonel once a month...my bones are actually regenerating!

    Hugs, Kathi

    your new rectum
    I was most interested in your "new rectum." Could you explain further. My radiation oncologist told me today in a consultation that the surgeon would be able to tell of she'd do an APR (non-sphincter, meaning having to do the colostomy pouch) or LAR (if cancer is not right at the bottom of rectum then it can spared, thus no colostomy pouch). So, you can see I'm curious about what you had done.
  • KathiM
    KathiM Member Posts: 8,028 Member
    #6
    mstwit said:

    your new rectum
    I was most interested in your "new rectum." Could you explain further. My radiation oncologist told me today in a consultation that the surgeon would be able to tell of she'd do an APR (non-sphincter, meaning having to do the colostomy pouch) or LAR (if cancer is not right at the bottom of rectum then it can spared, thus no colostomy pouch). So, you can see I'm curious about what you had done.

    It's totally amazing to me....
    My tumor was in the first rectal fold. Just above the sphincter, so I was a good candidate for the surgery.

    My surgeon did a J-pouch proceedure, one that is usually associated with small bowel, but he used my descending colon to make the pouch. He removed the rectum and the sigmoid colon, released the transverse colon from it's mooring on the liver, and made the pouch.

    He reconnected the whole thing right then and there, although I understand that he now usually does a temporary colostomy, just to let the area heal. But, for me, I was using my 'new' plumbing that night...passing gas!!!!

    It took some retraining of my eating habits, and a sensitivity to milk products from the chemo didn't help matters.

    But, almost 5 years later (May, 05), I will challenge anyone with a full set of plumbing to anything, anytime. It is totally amazing that an organ that was, for 49 years, expected to move! move! move! (descending colon) relearned to hold! hold! hold!

    At the same time, I had a total hysterectomy.

    Private message me anytime, or whatever...I'm a success story!

    Hugs, Kathi
  • Shayenne
    Shayenne Member Posts: 2,342
    #7
    mstwit said:

    colostomy puch
    Thanks for your input. It gives me hope and a better outlook.

    I have....
    .. a temporary colostomy, which I have gotten used to and actually think it's a more convenient way to go, I'm kind of scared to get my reversal since I keep hearing of the hard, painful times some people go through with learning to use their bowels the normal way again.

    I don't mind it, and think of it more as part of my daily routine, it doesn't take me long anymore to change it, I try to jump in the shower, and really quickly shower before I EVEN feel poop coming, having paper towels next to me, to grab it, in case anything comes out, which rarely happened, it seems to be on a signal, I'm able to shower now, and not poop during it!!!

    But, it's just something your ostomy nurse will be teach you, they have good information there on what to use and how to do it, I kind of just think of it as another way to with no accidents, it just seems more convenient now then bending over to me lol...

    Hugsss!
    ~Donna

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