Brother needs colostomy bag

marialw777
marialw777 Member Posts: 26
edited March 2014 in Colorectal Cancer #1
Hello everyone,
My brother has had the surgery and is home with me know...He has a very strong smell about him... can you help me with this....Also, the surgeon had told him when they were working on him that the cancer has spread to the lining of the stomach and there really was nothing else they could do for him, since he has already had 3 sessions of chemo....I heard alot about City of Hope... and I am going to talk to the onco tomorrow and request that my brother gets referred over there. Can anyone tell about City of Hope??

Thank you,
Maria

Comments

  • Shandle
    Shandle Member Posts: 204
    #2
    Hi Maria, I don't know much about City of Hope. You can log on to the web site at www.cityofhope.org .... it looked pretty interesting. maybe others on this site know something. Huggs and prayers ~ Wanda
  • MJay
    MJay Member Posts: 132
    #3
    Hi Maria~

    There is a product by Hollister for odor. The drops are called M9 and can be ordered through your ostomy supplier. Otherwise if the appliance is applied correctly and fitting properly there shouldn't be an odor.

    MJay
  • nanuk
    nanuk Member Posts: 1,358 Member
    #4
    contact Barbara Wright-(New Patient Services Dept.)
    800-826-4673 extension 62918/ bknight@coh.org
    or, Marilyn Rhodes-(Oncology Nurse @ Cancer Info Center) 877-467-3411
    RE the bag: there are many ostomy products for this problem; some mfgs make a bag with an odor
    barrier, and there are a number of products, liquid and tablet form, that you can place in the
    bag to reduce odor. Here are some links for more info: http://www.ostomy.evansville.net/weeklymail95.htm
  • KKLoop
    KKLoop Member Posts: 73
    #5
    Is the odor from the bag? When Mom returned home, she had odor, but it was from her bottom...is he having to heal from the inside out? If this is it, he might have to be "packed" to dry up the wound. Let me know.....
  • marialw777
    marialw777 Member Posts: 26
    #6
    Shandle said:

    Hi Maria, I don't know much about City of Hope. You can log on to the web site at www.cityofhope.org .... it looked pretty interesting. maybe others on this site know something. Huggs and prayers ~ Wanda

    Thank you Wanda,

    Maria
  • marialw777
    marialw777 Member Posts: 26
    #7
    MJay said:

    Hi Maria~

    There is a product by Hollister for odor. The drops are called M9 and can be ordered through your ostomy supplier. Otherwise if the appliance is applied correctly and fitting properly there shouldn't be an odor.

    MJay

    Hi MJay,
    I will check that out...
    Thank you,
    Maria
  • marialw777
    marialw777 Member Posts: 26
    #8
    nanuk said:

    contact Barbara Wright-(New Patient Services Dept.)
    800-826-4673 extension 62918/ bknight@coh.org
    or, Marilyn Rhodes-(Oncology Nurse @ Cancer Info Center) 877-467-3411
    RE the bag: there are many ostomy products for this problem; some mfgs make a bag with an odor
    barrier, and there are a number of products, liquid and tablet form, that you can place in the
    bag to reduce odor. Here are some links for more info: http://www.ostomy.evansville.net/weeklymail95.htm

    Thank you nanuk,

    I will check this out also....

    Maria
  • marialw777
    marialw777 Member Posts: 26
    #9
    KKLoop said:

    Is the odor from the bag? When Mom returned home, she had odor, but it was from her bottom...is he having to heal from the inside out? If this is it, he might have to be "packed" to dry up the wound. Let me know.....

    Hi KKLoop,

    I really don't know where the odor was coming from... I think it was the bag and the incision..today was better, I didn't smell it . The problem we are having now is the incision is leaking reddish fluid...it was happening in the hospital also, but the surgeons said it was nothing to worry about.... the primary dr. today said we better keep a close eye on it and if it continues get him to the e.r.
    Hopefully it will heal

    How is your mom?

    Thank you,
    Maria
  • KKLoop
    KKLoop Member Posts: 73
    #10
    marialw777 said:

    Hi KKLoop,

    I really don't know where the odor was coming from... I think it was the bag and the incision..today was better, I didn't smell it . The problem we are having now is the incision is leaking reddish fluid...it was happening in the hospital also, but the surgeons said it was nothing to worry about.... the primary dr. today said we better keep a close eye on it and if it continues get him to the e.r.
    Hopefully it will heal

    How is your mom?

    Thank you,
    Maria

    Okay, here is the deal we had! The incision(her rectum) has got to heal from the inside out. This is a process that doesn't happen overnight. Mom described the smell like "a dead rat". The red fluid was normal.....but we had to "Pack" her rectum with "mesalt" gauze which allowed the cavity to heal. This area needs to get dry so that the fat can grow together. Mom started leaking fluid and it had a smell. When he goes for his follow-up, the Doc might mention this. Mom didn't have any smell assoc. with the bag-it was her bottom. Hope this helps... She is healing now and only has to be packed 1 a day and her cavity is almost closed!!! Surgery was Dec. 20, 2004.
  • marialw777
    marialw777 Member Posts: 26
    #11
    KKLoop said:

    Okay, here is the deal we had! The incision(her rectum) has got to heal from the inside out. This is a process that doesn't happen overnight. Mom described the smell like "a dead rat". The red fluid was normal.....but we had to "Pack" her rectum with "mesalt" gauze which allowed the cavity to heal. This area needs to get dry so that the fat can grow together. Mom started leaking fluid and it had a smell. When he goes for his follow-up, the Doc might mention this. Mom didn't have any smell assoc. with the bag-it was her bottom. Hope this helps... She is healing now and only has to be packed 1 a day and her cavity is almost closed!!! Surgery was Dec. 20, 2004.

    My brother didn't have any problem with the rectum...I mean, the cancer is in the rectum and colon, but when they went in and diverted the colon through the leftside abdomen,they didn't say anything regarding the rectum, just that he would be using the bag instead and hopefully if we are able to get rid of the cancer, they would reverse the colon.
    I hope your mom is getting better.
    Maria
  • KKLoop
    KKLoop Member Posts: 73
    #12
    marialw777 said:

    My brother didn't have any problem with the rectum...I mean, the cancer is in the rectum and colon, but when they went in and diverted the colon through the leftside abdomen,they didn't say anything regarding the rectum, just that he would be using the bag instead and hopefully if we are able to get rid of the cancer, they would reverse the colon.
    I hope your mom is getting better.
    Maria

    I see. Mom's tumor consumed her rectum and they completely removed her rectum-leaving an open cavity. Has the rectal tumor been removed? How big was it? ARe they tryi8ng to save his rectum and then reconnect?
  • marialw777
    marialw777 Member Posts: 26
    #13
    KKLoop said:

    I see. Mom's tumor consumed her rectum and they completely removed her rectum-leaving an open cavity. Has the rectal tumor been removed? How big was it? ARe they tryi8ng to save his rectum and then reconnect?

    No, they did not remove any cancer...When Jesper went into the hospital a week ago Mon. they said he was so blocked that his colon was ready to burst, so they had to divert the colon through the abdomen and when it was all done, I spoke with the surgeon to see if all the cancer was removed, but he told me they didn't remove any of it....they were only to go in and divert the colon....so now he still has the cancer plus it spread into the stomach lining they told us and a colostomy bag... I don't understand why they left all the cancer in his colon, they were already working on him, why not remove it????
    Maria
  • KKLoop
    KKLoop Member Posts: 73
    #14
    marialw777 said:

    No, they did not remove any cancer...When Jesper went into the hospital a week ago Mon. they said he was so blocked that his colon was ready to burst, so they had to divert the colon through the abdomen and when it was all done, I spoke with the surgeon to see if all the cancer was removed, but he told me they didn't remove any of it....they were only to go in and divert the colon....so now he still has the cancer plus it spread into the stomach lining they told us and a colostomy bag... I don't understand why they left all the cancer in his colon, they were already working on him, why not remove it????
    Maria

    WOW! Hard question. Maybe they diverted the colon to avoid rupture and then more spreading. Are they planning to go in and remove the tumor?
  • marialw777
    marialw777 Member Posts: 26
    #15
    KKLoop said:

    WOW! Hard question. Maybe they diverted the colon to avoid rupture and then more spreading. Are they planning to go in and remove the tumor?

    So far there is no mention of surgery....We see the onco Wed. We are asking him to refer Jesper to the City of Hope.... I'm not 100% sure that our Dr. knows how to treat him....We feel that City of Hope would be better equipped to handle this....We hope and pray when we see the Dr. it hasn't progressed to much!!!
    I am glad to hear your mom is doing well on the Avastin.... I hope it continues!!!

    Maria

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