Need to connect with anyone who has a Colostomy for rectal cancer. I have to get a permanent one.

keepthink3
keepthink3 Member Posts: 15
edited March 2014 in Colorectal Cancer #1
Please someone share your experience with this operation. I am desperate to know what to do what to expect and how to cope and get through with it.

Comments

  • Shayenne
    Shayenne Member Posts: 2,342
    #2
    Hi there!
    I don't have rectal cancer, I have Colon cancer with a tumor in my liver, but do have a colostomy. I had a perforated colon in March, which led me to the ER room, having emergency surgery done to get the colostomy. It took a few hours, but it saved my life. Some people have a hard time with it, some don't, I don't have a hard time with mine, I think of it as one of my battle wounds, it actually also becomes routine with me, like brushing your hair and teeth, now I have an appliance to change that is located on my left side.

    I don't know if alot of people here had ostomies with their rectal cancer, but there is a great ostomy site here where there is alot of good advice and what to expect and all that:

    http://www.uoaa.org

    Go to the "Discussion Boards" and you'll see alot of people in our situations with tips about it and all. Hope it helps!

    Hugsss!
    ~Donna
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #3
    Shayenne said:

    Hi there!
    I don't have rectal cancer, I have Colon cancer with a tumor in my liver, but do have a colostomy. I had a perforated colon in March, which led me to the ER room, having emergency surgery done to get the colostomy. It took a few hours, but it saved my life. Some people have a hard time with it, some don't, I don't have a hard time with mine, I think of it as one of my battle wounds, it actually also becomes routine with me, like brushing your hair and teeth, now I have an appliance to change that is located on my left side.

    I don't know if alot of people here had ostomies with their rectal cancer, but there is a great ostomy site here where there is alot of good advice and what to expect and all that:

    http://www.uoaa.org

    Go to the "Discussion Boards" and you'll see alot of people in our situations with tips about it and all. Hope it helps!

    Hugsss!
    ~Donna

    Permanent ostomy here also....
    If you need questions answered just ask away and I will try to cover all of your bases plus some....... Its not bad at all...it just seems that way to you right now....Mine is just something else I have to do in the morning...No big deal so keep the chin up....

    Although it did lessen my chances of becoming a Chippendale.....LOL....Just kiddin'
  • qwe
    qwe Member Posts: 124
    #4
    Buzzard said:

    Permanent ostomy here also....
    If you need questions answered just ask away and I will try to cover all of your bases plus some....... Its not bad at all...it just seems that way to you right now....Mine is just something else I have to do in the morning...No big deal so keep the chin up....

    Although it did lessen my chances of becoming a Chippendale.....LOL....Just kiddin'

    I have a colostomy and I had
    I have a colostomy and I had my surgery March 26 Th this year getting used to it now.
    It will take time.You will get a stoma nurse who will teach you how to take care of it.
    After surgery the DR will send you home with a prescription for pain pills do take them.
    If you have no one to help you at home a nurse will be sent to your house it take's a while
    to heal so let the process happen and you will be OK.You may be in the hosiptal fore 8 to 10 days.Wight down all question and ask your Dr.Did you have radiations & chemo treatment yet?What stage are you in I was a stage 2 had all the treatments before surgery do not need chemo I am now cancer free thank you God.Hope I helped.
  • lmliess
    lmliess Member Posts: 329
    #5
    Colostomy here...
    I was DX with rectal cancer with mets to the liver 12/2008. I htought I was dealing with a bad fissure for a few months. NO IDEA what was really heading my way when I made that appointment to see the dr!
    I had my surgery for my perm colostomy surgery March 10 and my liver resection April 9. I first had 28 rounds of radiation and chemo - 5FU 24/7. They got all the cancer during those surgeries and now I am doing a round of chemo to make sure no cells are there that can't be found on a scan.
    I have to remember that the colostomy saved my life and then I am okay with it. To be honest, I think I spend too much time getting wrapped up in it and not getting on with life with it. You can't spend all your time researching ostomy supplies!! I am 3 months out and I have figured out what pouches work with what outfit. No one can tell I have it.
    Make sure you see a ostomy nurse before and after because you may have alot of questions. If there was one piece of advice I can give that would be to WALK WALK WALK as soon as posible after surgery. That gets everything moving and you on the road to recovery.

    This is a wonderful site and there are some great people that come here to help with questions and concerns and experiences.
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #6
    Sorry
    Sorry you had to find this board. I assume that by you posting on the the ACS message board that you have had some type of colorectal cancer and this is what is leading you to a permanent colostomy. To be honest, I was terrified when I first learned of me having to have an ostomy. I found out Dec. 1, 2008, that I had cancer (never suspected) and Dec. 11 that I was going to have an ostomy. On Dec 13 I went to the UOAA boards and researched and then in February started going to Ostomy meetings. It prepared me for what was coming so I was more comfortable with it when I had my surgery. I actually just came back from a meeting today.

    We are no different than anyone else except we poop from the front instead of the back. Please go to the UOAA.org and read some of the messages to get familiar with what is going to happen. Also, post any concerns here as we can help with almost anything.

    Let us know how you are doing.

    Kim
  • lmliess
    lmliess Member Posts: 329
    #7
    Annabelle41415 said:

    Sorry
    Sorry you had to find this board. I assume that by you posting on the the ACS message board that you have had some type of colorectal cancer and this is what is leading you to a permanent colostomy. To be honest, I was terrified when I first learned of me having to have an ostomy. I found out Dec. 1, 2008, that I had cancer (never suspected) and Dec. 11 that I was going to have an ostomy. On Dec 13 I went to the UOAA boards and researched and then in February started going to Ostomy meetings. It prepared me for what was coming so I was more comfortable with it when I had my surgery. I actually just came back from a meeting today.

    We are no different than anyone else except we poop from the front instead of the back. Please go to the UOAA.org and read some of the messages to get familiar with what is going to happen. Also, post any concerns here as we can help with almost anything.

    Let us know how you are doing.

    Kim

    Kim - 12/1/08!!
    I found out that day too!! We will have to celebrate 12/1/2009 when we are free and clear of the beast!!
  • karguy
    karguy Member Posts: 1,020 Member
    #8
    colosomy bag
    I had colorectal cancer,stage 3,going on stage 4,and when they did the surgery they took everything out down below,including my appendix.After about a month some stiches tore open,no big deal,some times it happens,and sometimes it does't.Then it starts to drain.I wore a wound vac for awhile,then a heavy duty sanitary pad.It will heal up,and compleatly seal.I have been wearing a permanant colostomy bag since july 08,and you will get used to it,it's really no big deal,it just becomes part of your daily routine.No one will ever know,and I do the same things I did before,just be calm,thers nothing to worry about.best wishes
  • mommyof2kds
    mommyof2kds Member Posts: 519
    #9
    new to ostomy
    I was diagnosed with stage 3 rectal cancer in feb, did chemo/rad. Just had surgery 6 days ago. I am still having alot of discomfort, but it is a major surgery. I am trying to get used to the ileostomy, but it is not easy, I am sure in a few weeks, it will just be a part of my routine. I will get it reversed eventually. I will then need more chemo. So, I don't have alot of info to offer, since I am learning myself, but so far it is ok...
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #10
    lmliess said:

    Kim - 12/1/08!!
    I found out that day too!! We will have to celebrate 12/1/2009 when we are free and clear of the beast!!

    Celebration
    I remember watching your post as you went in for surgery before me. I kept close tabs on you. I knew you were going through what I would be less than three weeks later. Yes, we will have to celebrate the "rid of beast" when that day comes, which I know it will.
  • serrana
    serrana Member Posts: 163 Member
    #11
    permanent colo???????
    Another option:
    In 2007 I was told I would have to have a permanent colostomy because my rectal tumor was right next to my anal sphincter. However..... being the headstrong broad that I am I didn't want to take the first opinion so I went to an NCI Cancer Center,Univ of California Irvine in Orange California, found a world class rectal surgeon for a second opinion. He said that a colo was not necessary and he took out my whole rectum and made a new rectum out of my colon, a procedure called a "J-Pouch. I had a temporary ileostomy for two months while it was healing
    I hope you have had an opportunity to consider this as an option. It took a while for my new "rectum' to learn to be a rectum, store stuff etc. but now it works just fine.
    My surgeon's name is Michael Stamos, MD. If you live a distance away you might want to contact him and get a referral near you that does this proceedure.
    Serrana
  • taraHK
    taraHK Member Posts: 1,952 Member
    #12
    not so bad
    Hi. I am sorry you are facing not only the diagnosis of rectal cancer but also the prospect of a permanent colostomy. I was in the same boat, 6+ years ago. The surgery is fairly major and you will need time to recover from that. The permanent ostomy IS an adjustment -- both psychologically and practically. But, in my experience, it is not so bad. I can wear almost everything I could before the surgery, I can hike, swim, have "an intimate life", etc. etc.

    The advice already given about stoma nurse (they can be called different names) is very true. You will be visited by the stoma nurse before your surgery. They will help you decide on best placement (eg avoid right on your belt line). Also, that person should visit you each day after the surgery, to help with care and give advice, etc. My stoma nurse gave me samples of several different colostomy pouches and systems. That was useful in helping me decide what product I wanted to use (that can take some trial and error).

    I now do something called irrigation. It is basically like giving yourself a colon cleanse (or enema) at home. This means I have NO output during the day/night -- and can in theory wear no pouch (although I wear a minipouch, just in case). This might be something you want to discuss with the stoma nurse. I was told I might not be able to do it because I had radiation before surgery -- but I can.

    Please feel free to ask any specific questions -- and do check out the ostomy board already mentioned. That site was a godsend to me when I was a "newbie".

    Good luck to you

    Best wishes,

    tara

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