Rectal Cancer

keepthink3
keepthink3 Member Posts: 15
edited March 2014 in Colorectal Cancer #1
Hello Everyone
I'm very new here. I would just like to get in touch with people who have had a permanent Colostomy. I'm a married 49 year old woman. I was told that I must have one now. To be performed in early July. I am so terrifed about this whole operation. I have no idea what to expect or what to do. Although I will be meeting with a nurse at some point, I just want to talk to other females who have gone through this or who are going to have to go through this operation. Hope to talk to somebody out there soon.

Comments

  • taraHK
    taraHK Member Posts: 1,952 Member
    #2
    Welcome!
    Welcome. I am sorry you are facing a permanent colostomy. First of all, are you certain it is a 'must'. Some others on this board may pitch in about other options (eg J-pouch) and the possibility of seeking out a second opinion. However, it is true that some people do have to have a permanent colostomy -- and I am one of them. I had rectal cancer and the tumur was very low indeed. Of course it is a big adjustment -- both psychologically and also practical issues. But, in my experience, after the initial adjustment phase, it is really not a big deal. I have had mine for well over 5 years and I really don't think about it much....it is a routine part of my life.

    I can wear most of the clothes I wore before (no bikinis ha ha -- I'm 51 and wouldnt be anyway). I swim, hike, jacuzzi (whenever I get a chance!), etc etc. And, pardon me bringing this up, can have a satisfactory 'intimate life' (hey, that's important too!).

    I have a few suggestions. First, it is great that you will be meeting with a nurse. I hope this means a special stoma nurse. They are full of extremely useful information, can give you samples of various products to try out, and will help you through the first stages. Second, check out the United Ostomy Assocation website -- which has a discussion board similar to this one -- full of helpful information and support. Third, try to keep a positive attitude. The most important thing is that you have great treatment to address the cancer. How you poop is no-one else's business, and you will get used to the new system.

    Please let me know if I can be of further help - -and I'm sure others will pitch in here too.

    Best wishes,
    Tara
  • nudgie
    nudgie Member Posts: 1,478 Member
    #3
    taraHK said:

    Welcome!
    Welcome. I am sorry you are facing a permanent colostomy. First of all, are you certain it is a 'must'. Some others on this board may pitch in about other options (eg J-pouch) and the possibility of seeking out a second opinion. However, it is true that some people do have to have a permanent colostomy -- and I am one of them. I had rectal cancer and the tumur was very low indeed. Of course it is a big adjustment -- both psychologically and also practical issues. But, in my experience, after the initial adjustment phase, it is really not a big deal. I have had mine for well over 5 years and I really don't think about it much....it is a routine part of my life.

    I can wear most of the clothes I wore before (no bikinis ha ha -- I'm 51 and wouldnt be anyway). I swim, hike, jacuzzi (whenever I get a chance!), etc etc. And, pardon me bringing this up, can have a satisfactory 'intimate life' (hey, that's important too!).

    I have a few suggestions. First, it is great that you will be meeting with a nurse. I hope this means a special stoma nurse. They are full of extremely useful information, can give you samples of various products to try out, and will help you through the first stages. Second, check out the United Ostomy Assocation website -- which has a discussion board similar to this one -- full of helpful information and support. Third, try to keep a positive attitude. The most important thing is that you have great treatment to address the cancer. How you poop is no-one else's business, and you will get used to the new system.

    Please let me know if I can be of further help - -and I'm sure others will pitch in here too.

    Best wishes,
    Tara

    Colostomy
    I did not have perament colostomy, but a temp one for about 7 months. It was on my left side around the sigmond colon area. My husband was GREAT. He wanted and learned how to take care of putting on the patch / bag system.

    I basically did everything I did before except weight lifting. The only issue I had was I had no control of gas. It would just happen and I would just smile or laugh along with my hubby :)

    This is something you will get used to and it eventually came part of my daily routine without even thinking or hesitating.

    I hope this helps.
  • Shayenne
    Shayenne Member Posts: 2,342
    #4
    nudgie said:

    Colostomy
    I did not have perament colostomy, but a temp one for about 7 months. It was on my left side around the sigmond colon area. My husband was GREAT. He wanted and learned how to take care of putting on the patch / bag system.

    I basically did everything I did before except weight lifting. The only issue I had was I had no control of gas. It would just happen and I would just smile or laugh along with my hubby :)

    This is something you will get used to and it eventually came part of my daily routine without even thinking or hesitating.

    I hope this helps.

    I have...
    ...a temporary colostomy that can be reversed in a few months, it saved my life, I had to get it during an emergency surgery, when my colon perforated, and bowels were going into my belly.

    I have a long incision scar, from the top of my stomach to the bottom, and had it open, which they used a wound vac to heal the incision, instead of wet/dry sealings, it actually is an amazing little machine which cuts down on all the infection, bacteria, blood and yucky stuff that can get get into the incision, and infect it. I had no problems with the incision, it has healed nicely, I wore it for about 5 weeks, and a couple of home health nurses actually came to my house 3 times a week to change the sponges that are in the incision, and redress it.

    The colostomy part took some getting used too, as the other site is good for that, but I have no problems with it now, it's just pooping from a different part of your body to me now, takes some time to change the bag, I don't shower with it, I want to feel alittle normal in the shower, and I clean it about every other day, I wear big shirts so no one can see the bag, mine are opaque as well, I didn't like the see-through bags, I didn't want my kids seeing what was coming out of me as well lol...but you will see it does become just part of a routine like brushing your teeth, and hair, It's usually the first thing I do after the shower, putting the bag back on :)

    Hugsss!
    ~Donna
  • keepthink3
    keepthink3 Member Posts: 15
    #5
    taraHK said:

    Welcome!
    Welcome. I am sorry you are facing a permanent colostomy. First of all, are you certain it is a 'must'. Some others on this board may pitch in about other options (eg J-pouch) and the possibility of seeking out a second opinion. However, it is true that some people do have to have a permanent colostomy -- and I am one of them. I had rectal cancer and the tumur was very low indeed. Of course it is a big adjustment -- both psychologically and also practical issues. But, in my experience, after the initial adjustment phase, it is really not a big deal. I have had mine for well over 5 years and I really don't think about it much....it is a routine part of my life.

    I can wear most of the clothes I wore before (no bikinis ha ha -- I'm 51 and wouldnt be anyway). I swim, hike, jacuzzi (whenever I get a chance!), etc etc. And, pardon me bringing this up, can have a satisfactory 'intimate life' (hey, that's important too!).

    I have a few suggestions. First, it is great that you will be meeting with a nurse. I hope this means a special stoma nurse. They are full of extremely useful information, can give you samples of various products to try out, and will help you through the first stages. Second, check out the United Ostomy Assocation website -- which has a discussion board similar to this one -- full of helpful information and support. Third, try to keep a positive attitude. The most important thing is that you have great treatment to address the cancer. How you poop is no-one else's business, and you will get used to the new system.

    Please let me know if I can be of further help - -and I'm sure others will pitch in here too.

    Best wishes,
    Tara

    Permanent Colostomy
    Thank you Tara and everyone else who responded. I do appreciate your responses, because I felt like there was no one out there who has gone through what I am about to go through. Knowing that you have been through this I really would like to keep in touch by asking for more advice and questions. You have been so helpful just from your response. It truly gives me hope that I can get through this and still tell myself that I'm still going to be me. I now know I am not alone.
  • Shayenne
    Shayenne Member Posts: 2,342
    #6
    keepthink3 said:

    Permanent Colostomy
    Thank you Tara and everyone else who responded. I do appreciate your responses, because I felt like there was no one out there who has gone through what I am about to go through. Knowing that you have been through this I really would like to keep in touch by asking for more advice and questions. You have been so helpful just from your response. It truly gives me hope that I can get through this and still tell myself that I'm still going to be me. I now know I am not alone.

    We're here!
    Anything you need help with, or just need someone just to vent off too, we're here for you~ Let us know how everything is going, you're not alone :) If me, a lil wuss of a thing can do this, so can you! it will save your life, it's an adjustment, but it's doable!

    Hugssss!
    ~Donna
  • Madelyn67
    Madelyn67 Member Posts: 8
    #7
    I have a permanent also.
    I have a permanent also. The operation wasn't bad, but then again I was out for the whole thing. LOL They put on the vac system to help it heal faster, but unfortunately, in my case, it was too painful when they changed the sponge, so I went without it and packed and unpacked 2 times a day. But everyone is different. You need to go with what makes you comfortable and just because the doctor says one thing doesn't mean you can try other options.

    After a while you get used to the whole situation. I found using warm water to clean out the bag is the best, it breaks up everything and the stool doesn't stick to the opening of the bag.

    Always remember that you are not the only one that has gone through this.
  • Madelyn67
    Madelyn67 Member Posts: 8
    #8
    taraHK said:

    Welcome!
    Welcome. I am sorry you are facing a permanent colostomy. First of all, are you certain it is a 'must'. Some others on this board may pitch in about other options (eg J-pouch) and the possibility of seeking out a second opinion. However, it is true that some people do have to have a permanent colostomy -- and I am one of them. I had rectal cancer and the tumur was very low indeed. Of course it is a big adjustment -- both psychologically and also practical issues. But, in my experience, after the initial adjustment phase, it is really not a big deal. I have had mine for well over 5 years and I really don't think about it much....it is a routine part of my life.

    I can wear most of the clothes I wore before (no bikinis ha ha -- I'm 51 and wouldnt be anyway). I swim, hike, jacuzzi (whenever I get a chance!), etc etc. And, pardon me bringing this up, can have a satisfactory 'intimate life' (hey, that's important too!).

    I have a few suggestions. First, it is great that you will be meeting with a nurse. I hope this means a special stoma nurse. They are full of extremely useful information, can give you samples of various products to try out, and will help you through the first stages. Second, check out the United Ostomy Assocation website -- which has a discussion board similar to this one -- full of helpful information and support. Third, try to keep a positive attitude. The most important thing is that you have great treatment to address the cancer. How you poop is no-one else's business, and you will get used to the new system.

    Please let me know if I can be of further help - -and I'm sure others will pitch in here too.

    Best wishes,
    Tara

    Tara I have a question for you...
    how is it possible that you can go swimming and jacuzzi with the ostomy bag? I tried to shower with the bag on and once it gets wet it comes loose. Could you please, please let me know how you do this. It would be greatly appreciated. If you don't want to tell me on here, you can email me at Madelyn1967@hotmail.com.

    I love to swim and haven't been able to go near a pool since I got my system. :-(
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #9
    Madelyn67 said:

    I have a permanent also.
    I have a permanent also. The operation wasn't bad, but then again I was out for the whole thing. LOL They put on the vac system to help it heal faster, but unfortunately, in my case, it was too painful when they changed the sponge, so I went without it and packed and unpacked 2 times a day. But everyone is different. You need to go with what makes you comfortable and just because the doctor says one thing doesn't mean you can try other options.

    After a while you get used to the whole situation. I found using warm water to clean out the bag is the best, it breaks up everything and the stool doesn't stick to the opening of the bag.

    Always remember that you are not the only one that has gone through this.

    Madelyn67
    I am male but in answer to your question about jacuzzis and swimming I am considering irrigation very hard. It seems to allow you to just wear a small patch over your ostomy for a day or so. I think that if this were to happen then I could get some of the shields that they use for 5fu fanny pack port hookups that allow you to take a shower and simply seal it on all 4 sides.....


    also keepthink3.....I have a permanent ostomy also and its now after a year a piece of cake...although my chippendale tryout days are over.......ho-hum........
  • qwe
    qwe Member Posts: 124
    #10
    Buzzard said:

    Madelyn67
    I am male but in answer to your question about jacuzzis and swimming I am considering irrigation very hard. It seems to allow you to just wear a small patch over your ostomy for a day or so. I think that if this were to happen then I could get some of the shields that they use for 5fu fanny pack port hookups that allow you to take a shower and simply seal it on all 4 sides.....


    also keepthink3.....I have a permanent ostomy also and its now after a year a piece of cake...although my chippendale tryout days are over.......ho-hum........

    Hi I have a a permanent
    Hi I have a a permanent ostomy had my surgery March 26TH I was on pain pills for
    5 weeks the Dr will right you a scrip do take then for you will need them.It takes
    time to get used to it but after a while it gets easier.The Dr had to take my rectum
    and sew my back end up I still have a crack so it looks normal hope I am not scaring
    you but you did ask about how it was.The colostomy saved my life.so good lock with yours.
    And you can wear the bag in the shower I have no problem with it your stoma nurse will
    help you pick out the right supplies you need and they get free samples from different
    suppliers I have to use a convex light barrier that is the base plate you put the bag on
    and I have the bag with the round clip at the top of the bag it is much easier to put on and take off it is also a drain able pouch (bag)I get my supplies from coloplast.
    Hope I help you and again good luck.

    Qwe
  • keepthink3
    keepthink3 Member Posts: 15
    #11
    Permanent Colostomy
    I am so grateful for all the helpful information from all of you out there.I am still in a state of confusion and denial and depression etc. but I think I will get through this now because of all of you. My surgery is set for July 2 just before my birthday on the 4th. What a way to spend a holiday but I do want to have more. I am so desperate for any and all information you share with me. Thank you for letting me that I am not alone.
  • lmliess
    lmliess Member Posts: 329
    #12
    keepthink3 said:

    Permanent Colostomy
    I am so grateful for all the helpful information from all of you out there.I am still in a state of confusion and denial and depression etc. but I think I will get through this now because of all of you. My surgery is set for July 2 just before my birthday on the 4th. What a way to spend a holiday but I do want to have more. I am so desperate for any and all information you share with me. Thank you for letting me that I am not alone.

    You can do it!
    I am 38 and was DX"d in Dec 2008 with rectal cancer with mets to the liver. I had my perm colostomy surgery in March. I just returned back to work today and did okay with it. No one even knows. I figured no one asked about my butt and all the details so they don't need to about the colostomy.
    It took me awhile to get used to it. It was a mental thing. But I figured out how to disguise it under my clothes and no one knows. I even had a sports bra tank top and shorts on for my walk on the trail the other day and no one knew. I found microfiber BRIEFS by Bali at Kohls. Yes briefs...my day of Victoria Secret may be gone. But I wear a 2 piece disposable bag - HOLISTER. I just pull the briefs over the bag and it holds in in flat against your body.

    I am still working through having this. But then I look at my 5 year old and my husband and THANK GOD they have the ability to do this surgery. I believe it saved my life. It took the cancer out of my body and just re-routed things a little.

    It is an adjustment but it is not that bad. You just have to think how great it is to have the cancer removed.

    OH - WALK as much as you can as soon as you can. Walking keeps things moving and I learned the hard way that thinking you need to lay around to recover is the best. Rest when you are tired but stay active and move around and walk.
  • keepthink3
    keepthink3 Member Posts: 15
    #13
    Permanent Colostomy
    lmliess, Thank you for the input and encouragement. I need it soooo bad. I do think about my two kids,10 and 13 and my husband. That helps me alot. But everything doesn't change the fact that I am still so terrified of what has to be done. Even though I have tried to read up about things and of course get information from everyone, I feel so incredibly clueless about what's going to happen how I will look and how to take care of myself. I know I will be taught these things but I just can't get through the fear that I have about this operation. I have silly questions like how do you sleep? Not that I can sleep through the night now but do you have to sleep on the opposite side? Silly I know. I'm starting to talk to other people who have had it done but I don't want to make anyone feel uncomfortable about my silly questions I may have. So whatever you all have to say , please, please tell me all about your experience because I urgently need to know. I know you should be able to return to your normal activities , but what are some of the limitaions that anyone finds that you really can't do or avoid doing? And yes, I've come to accept that my days at Victorias Secret are over with too!
  • keepthink3
    keepthink3 Member Posts: 15
    #14
    keepthink3 said:

    Permanent Colostomy
    lmliess, Thank you for the input and encouragement. I need it soooo bad. I do think about my two kids,10 and 13 and my husband. That helps me alot. But everything doesn't change the fact that I am still so terrified of what has to be done. Even though I have tried to read up about things and of course get information from everyone, I feel so incredibly clueless about what's going to happen how I will look and how to take care of myself. I know I will be taught these things but I just can't get through the fear that I have about this operation. I have silly questions like how do you sleep? Not that I can sleep through the night now but do you have to sleep on the opposite side? Silly I know. I'm starting to talk to other people who have had it done but I don't want to make anyone feel uncomfortable about my silly questions I may have. So whatever you all have to say , please, please tell me all about your experience because I urgently need to know. I know you should be able to return to your normal activities , but what are some of the limitaions that anyone finds that you really can't do or avoid doing? And yes, I've come to accept that my days at Victorias Secret are over with too!

    Permanent Colostomy
    Just wanted everyone to know that I made it through the operation back on July 2. I am so greatful to be able to sit here and actually say that. I never thought this day would get here. I am starting to resume my life before this operation. I drove last week! Going to the store, getting outside, walking up and down steps around the house etc. Of course I still have and will have my down time about this body change and life change. I am still trying to get use to things. The tears aren't as much. I just have to think about my family and it keeps me focused on moving on. I still have a few rounds of chemo to hopefully finish up. It's still not easy but I have gotten to this point and to me it's a major step.
  • qwe
    qwe Member Posts: 124
    #15
    keepthink3 said:

    Permanent Colostomy
    Just wanted everyone to know that I made it through the operation back on July 2. I am so greatful to be able to sit here and actually say that. I never thought this day would get here. I am starting to resume my life before this operation. I drove last week! Going to the store, getting outside, walking up and down steps around the house etc. Of course I still have and will have my down time about this body change and life change. I am still trying to get use to things. The tears aren't as much. I just have to think about my family and it keeps me focused on moving on. I still have a few rounds of chemo to hopefully finish up. It's still not easy but I have gotten to this point and to me it's a major step.

    Hi Keep I sleep on
    Hi Keep
    I sleep on either side just not on my belly.I also mow the lawn.I had my
    surgery on March 26TH it took me almost 4 months to recover I am going back
    to work Aug 1 TH and I am a cashier at a Wal-Mart Supper Center I have been
    there coming up on 11 years I just have to be careful not to left any thing to
    heavy.You should be able to live a normal life.

    PS did you have Radiation and chemo and are you clean now of cancer?
  • KathiM
    KathiM Member Posts: 8,028 Member
    #16
    keepthink3 said:

    Permanent Colostomy
    Just wanted everyone to know that I made it through the operation back on July 2. I am so greatful to be able to sit here and actually say that. I never thought this day would get here. I am starting to resume my life before this operation. I drove last week! Going to the store, getting outside, walking up and down steps around the house etc. Of course I still have and will have my down time about this body change and life change. I am still trying to get use to things. The tears aren't as much. I just have to think about my family and it keeps me focused on moving on. I still have a few rounds of chemo to hopefully finish up. It's still not easy but I have gotten to this point and to me it's a major step.

    Great news!!!!!
    So glad you are taking your life back!!! But remember to take it slow....your body has been thru alot....a 'tincture of time' as they say really heals the day!

    Hugs, Kathi
  • keepthink3
    keepthink3 Member Posts: 15
    #17
    qwe said:

    Hi Keep I sleep on
    Hi Keep
    I sleep on either side just not on my belly.I also mow the lawn.I had my
    surgery on March 26TH it took me almost 4 months to recover I am going back
    to work Aug 1 TH and I am a cashier at a Wal-Mart Supper Center I have been
    there coming up on 11 years I just have to be careful not to left any thing to
    heavy.You should be able to live a normal life.

    PS did you have Radiation and chemo and are you clean now of cancer?

    After Coloscopy
    Thanks everybody. I did have chemo and radiation before the surgery. At my follow up visit the doctor said that my lymph nodes were clean. That was his good news to me. He has said this before and he said it again after all was done: "You will be at my retirement party." I pray that he's right about that. He has quite a few years before he retires!

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