Please tell me about having an ostomy...

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nana98
nana98 Member Posts: 31
edited March 2014 in Colorectal Cancer #1
My surgery is scheduled for July 7th. My surgeon gave me three scenarios. 1) Least likely - he will go in and find the tumor shrunk enough to remove and re-connect. No problem. 2) remove tumor and put in a temporary bag or 3) remove tumor and have to put in a permanent bag... Now to the question I have no idea what to expect, emotionally. The surgeon and nurses have been able to explain it to physically, but I want to know what I'm facing on an every day basis... I don't know anyone who has experienced living with a temporary or permanent bag and I just want to know first hand what to expect...If anyone could let me know their experiences I would be grateful..
Karen

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  • Glv49
    Glv49 Member Posts: 206 Member
    #2
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    Hi,
    Just a little info about myself first... I was diag. with Stage IV colon cancer on July 29, 2003, surgery, hysterectomy, removal of both of my ovaries.. and a colostomy, six months of chemo, 5Fu, and oxillaplatin, leucovorin.. a pump with continuous chemo for six weeks, and then every two weeks for the six months, along with six weeks of radiation to my pelvis.. I had two positive nodes also... my situation wasn't very promising I was told... but.. I decided to make the best of it. I orignially thought I was having surgery to remove an ovarian cyst.. so when I woke up to find out I had colon cancer, and a colostomy bag, at age 48 I was pretty upset to say the least... But, from the start I had a positive attitude, and a tremendous faith in God, that this disease would not kill me. So, far I have been blessed and continue to be NED, and it will be three years soon! I had my colostomy reversed after having it for 18 mos., and so far.. I have never had a problem! Now.. how you will deal with your colostomy... I can only tell you, when I looked at mine, I thought of it as, something that was necessary to save my life.. I think if you look at it that way, you will be able to deal with it. I got used to it, and if I had to , I could live with it, once I had a good ostomy nurse, that found a bag that fit me well, I did everything everyone else does, run, swim, have sex... sorry.. but it is a fact of life.. played with my grandchildren.. wore shorts, and nobody ever knew I had it. SO.. I am sure you will adjust to yours and be fine.. just know that if you need one, its an important part of the healing, and see it as something that is saving your life.. just like chemo, and radiation, I never ever feared it, I thought of everyone of those chemo treatments, as healthy , something good, which was helping me,.. and I never even got sick from any of them,.. I had some neuropathy from the oxilllaplatin, and couldn't drink anything cold for a couple of days.. but.. look at the good it did! So.. try to see it the way I did, and pray alot... and I'm sure you will be able to deal with it.. good luck to you, and God bless.

    Gail
  • KathiM
    KathiM Member Posts: 8,028 Member
    #3
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    Glv49 said:

    Hi,
    Just a little info about myself first... I was diag. with Stage IV colon cancer on July 29, 2003, surgery, hysterectomy, removal of both of my ovaries.. and a colostomy, six months of chemo, 5Fu, and oxillaplatin, leucovorin.. a pump with continuous chemo for six weeks, and then every two weeks for the six months, along with six weeks of radiation to my pelvis.. I had two positive nodes also... my situation wasn't very promising I was told... but.. I decided to make the best of it. I orignially thought I was having surgery to remove an ovarian cyst.. so when I woke up to find out I had colon cancer, and a colostomy bag, at age 48 I was pretty upset to say the least... But, from the start I had a positive attitude, and a tremendous faith in God, that this disease would not kill me. So, far I have been blessed and continue to be NED, and it will be three years soon! I had my colostomy reversed after having it for 18 mos., and so far.. I have never had a problem! Now.. how you will deal with your colostomy... I can only tell you, when I looked at mine, I thought of it as, something that was necessary to save my life.. I think if you look at it that way, you will be able to deal with it. I got used to it, and if I had to , I could live with it, once I had a good ostomy nurse, that found a bag that fit me well, I did everything everyone else does, run, swim, have sex... sorry.. but it is a fact of life.. played with my grandchildren.. wore shorts, and nobody ever knew I had it. SO.. I am sure you will adjust to yours and be fine.. just know that if you need one, its an important part of the healing, and see it as something that is saving your life.. just like chemo, and radiation, I never ever feared it, I thought of everyone of those chemo treatments, as healthy , something good, which was helping me,.. and I never even got sick from any of them,.. I had some neuropathy from the oxilllaplatin, and couldn't drink anything cold for a couple of days.. but.. look at the good it did! So.. try to see it the way I did, and pray alot... and I'm sure you will be able to deal with it.. good luck to you, and God bless.

    Gail

    Gail, what a wonderful, uplifting story!

    I was told my 'options' were the same...I came through with nothing external...but my lifestyle still had to change...I lost my rectum and sigmoid colon...the 'storage facilities' part of my digestive system. Your thoughts are the same as mine...this was necessary to survive. 1 1/2 years later, I have almost normal bathroom habits, and just know that if I eat certain things, I need to make sure there is a potty close by after about 30 minutes.
    Nana, the point is, go on, live life, it bothers the HECK out of the beast....it needs doom and gloom to survive!
    Hugs, Kathi
  • jerseysue
    jerseysue Member Posts: 624 Member
    #4
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    My story is almost idential to Gail's except I was 41. I remember waking up and finding out about everything I truly think it took me weeks for everything to sink in. About the bag, at first I was embarrassed by it. I wouldn't even touch it I made my husband empty it for me. (my sweet sweet husband) I cried and I didn't think that I could ever get used to it. Well it took me about 2 weeks to get over that and I told myself I better get used to it. It's been a year and I'm looking forward to my reversal. There are many types of bags out there for you. I like the disposal bags I just take it off and put it in a baggy then toss. I change my wafer roughly every 3 days. I only hope the best for you and I'm sending good vibes that it's scenario number 1 for you. Lots of luck. Sue
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #5
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    When I had my cancer surgery, I also wasn't sure what kind of ostomy I would have, if any. I awoke to a temporary ileostomy. I had a really low rectal tumor and had all of my rectal tissue removed. On post op day three I woke up and could not stop crying. I was overwhelmed. I had been a nurse for many years, had taken care of many patients with ostomys. I quickly learned to deal with the ostomy. I had no choice. The good news was that all my cancer was removed.

    I had my ostomy reversed as soon as it was offered. Eight weeks later I was back in surgery. It went down hill from there. I never regained good bowel control. I was going from 10 - 40 times a day. I went about 8 times during the night. My bottom was always raw. I spent about 3 hours a day in the tub. Sometimes I would take a bath at 2 am. I was also working full time. After many accidents, I decided to have a colostomy done. I have my life back. I havent looked back for a minute. I have just started irrigating and life is even better.

    BUT, the best part is that I remain cancer free after ALMOST 3 years. June 26, but who's counting.

    If you want to talk to me directly, email me through this site.

    Maureen
  • livin
    livin Member Posts: 318 Member
    #6
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    Hi nana98, here's my story went into the hospital for a colonoscopy with dialation came out with a colostomy.. I had what Dr. said a stricture that developed(sp) from radiation that I had recieved after colon cancer. The sticture took 3 yrs to occur after the colon cancer.(I had chemo and radation as treatment for this cancer) I remember May 25th by the way tomorrow is my 2 year anniversary for that tragic day. I kept telling the nurses something was wrong because in the pass I never had servere pains in my stomach as I was having after my colonoscopy. At first I was mad about the accident. Then I was depressed about it then I accepted it. I was told that after 3 months I would get it reversed. Well luck was not on my side In October just when I thought I was going to get it reversed they found I had Liver cancer. Colon cancer that had metast to my liver. I was told I had to wait at least a year or more because they were affraid of my cancer coming back in the colon. Ok almost 2 years later I went to the Dr. Last week and was told that it would'nt be wise to reverse because my intestine had started to stricture (Narrow) again. So as of last week I will have this colostomy the rest of my life. I have been through so much in the last 7 years fighting this cancer that it does not really bother me anymore The most important thing is Iam a live. I have gotten use to the colostomy I admit I do miss my tight fitting shirts. But hey nothing beats LIVIN. Once you get use to it it becomes easy and at times at least I don't have to run to a bathroom right away. Make sure you get a good ostomy nurse who will help fit you for a bag and explain the what if's.

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