Looking for people to talk to who have had a colostomy bag or have gone through treatment and surger

dlroth
dlroth Member Posts: 3
edited March 2014 in Colorectal Cancer #1
My grandmother was recently diagnosed and is scheduled to start radiation to reduce the size of the tumor next week. After 5 weeks they would like to operate and depending on how the surgery goes, she may need a colostomy bag afterwards. She would like to talk to anyone who has gone through treatment, has had this type of surgery, or who has a colostomy bag. Unfortunately she doesn't have email right now, but I can pass along any information to her, or she would be happy to call someone if there's anyone willing to talk to her about this. Any advice or help would be much appreciated.

Thank you in advance.

Kris Warren
Grandson to Ruth Warren

Comments

  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    #2
    Hi Kris
    Welcome to the site, I'm sure you'll get replies from everyone shortly.

    I'm from England, recently had my right colon removed on the 11/3/09, I had keyhole surgery, and I didn't need a colostmy bag, so I can't be uch help on the later I'm afraid.

    Lisa 42 did recommend a great site to another poster, which I had a look at today, it's http://fightcolorectalcancer.org/
    hopefully that can give you more info as well.

    Keep posting and let us know how your Grandmother gets on

    Hugs
    Sonia
  • taraHK
    taraHK Member Posts: 1,952 Member
    #3
    Happy to anwer questions
    Hi Kris,

    Sorry to hear about your grandmother's diagnosis. Great that you are helping her out with information.

    I was diagnosed with rectal cancer over 6 years ago. My treatment sounds similar to your grandmother's. I had 5.5. weeks of radiation before surgery, then surgery. These days, I know the surgeons do everything they can to avoid a permanent colostomy. But, sometimes that is not possible. (My tumour was very low).

    Having a permanent colostomy is not something anyone wishes for. But I can honestly say that, after some initial adjustment, it really isn't that bad -- it just becomes a normal part of one's routine. I can wear pretty much everything I wore before (but no bikinis! tell your grandmother!). I am active with sports, can swim and hot-tub, I work full-time.....

    It is very important that she sees a colostomy nurse (called different names in different places) before the surgery. Usually the surgeon/hospital arranges this for a day or two before the surgery. The colostomy nurse will discuss everything beforehand and should help determine placement of the stoma, which is important (don't want it right on your waistband, for example). And this person will help her while at hospital. Mine gave me free samples of various colostomy pouches so that I could see what brands/features I liked the best. The companies that sell the products can also be very helpful (free samples, nurse/specialist to help out).

    I'd be happy to supply more information or answer questions but I live overseas (Hong Kong) so a phone call probably isn't too practical! Maybe others can pitch in here.....

    Best wishes to your grandmother and thanks for helping her out

    Tara
  • taraHK
    taraHK Member Posts: 1,952 Member
    #4
    taraHK said:

    Happy to anwer questions
    Hi Kris,

    Sorry to hear about your grandmother's diagnosis. Great that you are helping her out with information.

    I was diagnosed with rectal cancer over 6 years ago. My treatment sounds similar to your grandmother's. I had 5.5. weeks of radiation before surgery, then surgery. These days, I know the surgeons do everything they can to avoid a permanent colostomy. But, sometimes that is not possible. (My tumour was very low).

    Having a permanent colostomy is not something anyone wishes for. But I can honestly say that, after some initial adjustment, it really isn't that bad -- it just becomes a normal part of one's routine. I can wear pretty much everything I wore before (but no bikinis! tell your grandmother!). I am active with sports, can swim and hot-tub, I work full-time.....

    It is very important that she sees a colostomy nurse (called different names in different places) before the surgery. Usually the surgeon/hospital arranges this for a day or two before the surgery. The colostomy nurse will discuss everything beforehand and should help determine placement of the stoma, which is important (don't want it right on your waistband, for example). And this person will help her while at hospital. Mine gave me free samples of various colostomy pouches so that I could see what brands/features I liked the best. The companies that sell the products can also be very helpful (free samples, nurse/specialist to help out).

    I'd be happy to supply more information or answer questions but I live overseas (Hong Kong) so a phone call probably isn't too practical! Maybe others can pitch in here.....

    Best wishes to your grandmother and thanks for helping her out

    Tara

    forgot to mention
    there are some great websites devoted to ostomy etc. I found these VERY useful, for the first year or so.

    Tara
  • dlroth
    dlroth Member Posts: 3
    #5
    taraHK said:

    Happy to anwer questions
    Hi Kris,

    Sorry to hear about your grandmother's diagnosis. Great that you are helping her out with information.

    I was diagnosed with rectal cancer over 6 years ago. My treatment sounds similar to your grandmother's. I had 5.5. weeks of radiation before surgery, then surgery. These days, I know the surgeons do everything they can to avoid a permanent colostomy. But, sometimes that is not possible. (My tumour was very low).

    Having a permanent colostomy is not something anyone wishes for. But I can honestly say that, after some initial adjustment, it really isn't that bad -- it just becomes a normal part of one's routine. I can wear pretty much everything I wore before (but no bikinis! tell your grandmother!). I am active with sports, can swim and hot-tub, I work full-time.....

    It is very important that she sees a colostomy nurse (called different names in different places) before the surgery. Usually the surgeon/hospital arranges this for a day or two before the surgery. The colostomy nurse will discuss everything beforehand and should help determine placement of the stoma, which is important (don't want it right on your waistband, for example). And this person will help her while at hospital. Mine gave me free samples of various colostomy pouches so that I could see what brands/features I liked the best. The companies that sell the products can also be very helpful (free samples, nurse/specialist to help out).

    I'd be happy to supply more information or answer questions but I live overseas (Hong Kong) so a phone call probably isn't too practical! Maybe others can pitch in here.....

    Best wishes to your grandmother and thanks for helping her out

    Tara

    Thanks Tara
    Should we email or do you want to set up a time to chat on some messenger service (aol IM, yahoo messenger or whatever you want)with her? My email is dlroth@hotmail with a .com after it. She was very excited to hear from you so thank you very much. She is very active and actually has a hot tub so she was happy to hear she could still do that.
  • taraHK
    taraHK Member Posts: 1,952 Member
    #6
    dlroth said:

    Thanks Tara
    Should we email or do you want to set up a time to chat on some messenger service (aol IM, yahoo messenger or whatever you want)with her? My email is dlroth@hotmail with a .com after it. She was very excited to hear from you so thank you very much. She is very active and actually has a hot tub so she was happy to hear she could still do that.

    will contact you
    Hi. Sorry for the slow reply -- I haven't been checking every day. I will send you a personal email so we can set up a chat with your grandmother. But I also wanted to post here because I am hoping some of my dear "fellow colostomates" from this board will pitch in a little here......

    Tara
  • dlroth
    dlroth Member Posts: 3
    #7
    taraHK said:

    will contact you
    Hi. Sorry for the slow reply -- I haven't been checking every day. I will send you a personal email so we can set up a chat with your grandmother. But I also wanted to post here because I am hoping some of my dear "fellow colostomates" from this board will pitch in a little here......

    Tara

    Thanks Tara. I look forward
    Thanks Tara. I look forward to hearing from you. Grandma started radiation and Chemo on Wednesday and sounds a little scared. I don't want her to give up so any poitive hope and stories people can share is much appreciated.
  • karguy
    karguy Member Posts: 1,020 Member
    #8
    colostomy bag
    i had surgery last july,after going thru 6 weeks of chemo.&radiation.i lost 60 lbs. by the time i was done.But it took the tumor from a stage 3,to a stage 1,and the surgery was sucessful.But i have to wear a colostomy bag permenantly, at first ihad to force myself to eat,and get used to the bag.I returned to work full time in january,and gained all my weight back.Now i am used to the bag ,and it is not a big deal,after awhile i just made the ajustment automaticly.The colostomy nurse was a big help,and you want to get the stoma as low as possible,below the belt line.I work as a police officer,and no one can tell,and it doesn't interfere with anything.If she has to wear abag no one will notice,and she can be as active as she wants to be.

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