Living with the BAG??

Schatzie
Schatzie Member Posts: 6
edited March 2014 in Colorectal Cancer #1
i have adenocarcinoma of the anus. i have had the chemotherapy & radiation therapy. now i have to have my rectum removed & that means that i will have a colectomy for the rest of my life. i have so much i need to know about this. so if someone has had this please talk to me
thank you

Comments

  • neon356
    neon356 Member Posts: 137 Member
    #2
    Hi Schatzie,

    Hi Schatzie,
    Boy oh boy, you shold really get a lot of responses on this one, my guess is that most everyone here has had a colostomy, either temporary or permanent. I've had a permanent ostomy for several years now. In my case I didn't have much time to think about it. I was diagnosed, had the surgery a few days later, and woke up with a bag. Sometimes I think that I might have been lucky in not having any time to wonder what was going on. Anyhow, since you have had all this time to wonder and worry about what it's like I'll say that at least in my caSE
  • neon356
    neon356 Member Posts: 137 Member
    #3
    Continuing

    Sorry about that, I hit the wrong button. I was saying that having a colostomy is really no big deal. In the beginning there may be minor problems because you'll be healing, but you get used to it quickly, it won't interfere with your life very much at all, and there will be times when it's a real advantage. A friend of mine had a colostomy, and he and his wife went on a trip to India. His wife told me on their return that the "facilities" in some of the places they went to were pretty bad, and she actually was jealous of her husband's not needing to use the toilet. I kidded her that she was suffering from stoma envy.But seriously, It's hard to say what to expect. You'll probably have a nurse specialist explain the basics, and as questions arise ask away. Good luck,...Carl
  • vinny3
    vinny3 Member Posts: 928 Member
    #4
    colostomy
    Hi Schatzie,

    I had rectal cancer and have had a permanent colostomy for almost 3 years. The hardest part is just at first, especially as they start with a transparent bag. I quickly changed to an opaque bag and that made a big difference in my outlook at the time. You quickly adjust to it and it is possible to live a quite normal life. There will be some mishaps- the seal is lost and the bag leaks and those things are very frightening at first. However, you quickly adjust and learn how to prevent them from happening. The most important thing is to have a good ostomy nurse. I do everything now I did before. Sometimes it is very convenient to have the bag and not have to always know where a bathroom is.

    Good luck and keep asking questions. ****
  • taraHK
    taraHK Member Posts: 1,952 Member
    #5
    Not so bad
    Hi. I am sorry that you are facing this....

    Everyone's different but I wanted to share my experience. I was diagnosed with Stage III rectal cancer 6 years ago. My tumor was very low....and I ended up having a permanent colostomy. Of course, it was a big psychological adjustment. But, I can tell you in all honesty, it is "no big deal" today. I can do everything I did before (including hiking, swimming, jacuzzi), wear almost everything I did before (OK, no bikini -- but I'm 50 now! not an option anyway!). And, if you'll excuse me bringing this up, have a good "intimate life". I agree with Vinny that you need to have a good colostomy nurse/specialist. They are a fantastic resource. I also frequented a couple of web-based discussion boards which were devoted to individuals with ostomies -- they were a godsend (like this one -- full of both practical suggestions and emotional support). Please let me or us know if you have specific questions or if there is anything we can help/address.

    Tara
  • hollyberry
    hollyberry Member Posts: 173
    #6
    Plumbing
    Hi Schatzie,
    I have had a permanent colostomy for about a year now; there is a psychological adjustment time, but you will get used to it and if you have good help from nurses, you will do just fine
    I decided to irrigate my ostomy within a couple of months of having surgery and am very happy with my results; I spend 45 minutes irrigating and am stool-free for 48 hours. I only wear a patch ( kinda like a band-aid) or a small stoma cap. You can find info on this and many other ostomy issues at www.uoaa.org; they were life-savers for me.
    Good luck and God bless,
    hollyberry
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #7
    Ostomy
    Yep...been there done that...Mine was low also, rectal but low enough to get clear margins the spincter muscle was removed thus viola a bag ..No big deal, Im still the sexy man I was before..LOL..Oh well good try...Its all in how you perceive it. It is an element of survival. Something as a scar in battle, to wear it means survival, and with survival comes happiness no matter how we look after battle.
    OK, enough of the cock and bull down to brass tacks. An ostomy is a little aggravating when it comes to sleeping, putting on pants, wearing belts etc. You will learn as you go. The main thing is not to get discouraged with it. It will become a part of your life soon enough and a good ostomy nurse will put you well on your way to the new adjustments . We also have all the information that you can handle right in here. All you have to do is ask , no matter what the question, we answer em all, sex,headaches,neuropathy,diarheaa, anything that has to do with cancer or just anything else period. We are not afraid to talk as you will find out soon enough, and there are an incredible amount of people in here with an incredible amount of information and also an incredible amount of Faith...God Bless you in your journey.....don't be a stranger
  • funnyguy
    funnyguy Member Posts: 89
    #8
    Light side of the experience
    If you get a chance...check out the book "If the Battle is Over, Why am I Still in Uniform?"
    It's a very short read...but covers the lighter side of the experience.
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    #9
    just wanted you to know mine
    just wanted you to know mine is temporary ( i hope) my outlook on this is not like everyone else, i feel like a freak.i have only had this for 3 weeks and it should be removed in about 3 to 4 more weeks. i pray every day when i can be normal again (ha ha) i will pray for you and i hope it gets better God bless johnnybegood
  • Schatzie
    Schatzie Member Posts: 6
    #10
    funnyguy said:

    Light side of the experience
    If you get a chance...check out the book "If the Battle is Over, Why am I Still in Uniform?"
    It's a very short read...but covers the lighter side of the experience.

    Book
    ty so much, i will check this out.
  • Schatzie
    Schatzie Member Posts: 6
    #11
    johnnybegood said:

    just wanted you to know mine
    just wanted you to know mine is temporary ( i hope) my outlook on this is not like everyone else, i feel like a freak.i have only had this for 3 weeks and it should be removed in about 3 to 4 more weeks. i pray every day when i can be normal again (ha ha) i will pray for you and i hope it gets better God bless johnnybegood

    pray is what we all need.
    i am so happy you can have yours removed. god has blssed you. thank you for talking to me. i will pray for you as you pray for me. ty
  • Schatzie
    Schatzie Member Posts: 6
    #12
    Buzzard said:

    Ostomy
    Yep...been there done that...Mine was low also, rectal but low enough to get clear margins the spincter muscle was removed thus viola a bag ..No big deal, Im still the sexy man I was before..LOL..Oh well good try...Its all in how you perceive it. It is an element of survival. Something as a scar in battle, to wear it means survival, and with survival comes happiness no matter how we look after battle.
    OK, enough of the cock and bull down to brass tacks. An ostomy is a little aggravating when it comes to sleeping, putting on pants, wearing belts etc. You will learn as you go. The main thing is not to get discouraged with it. It will become a part of your life soon enough and a good ostomy nurse will put you well on your way to the new adjustments . We also have all the information that you can handle right in here. All you have to do is ask , no matter what the question, we answer em all, sex,headaches,neuropathy,diarheaa, anything that has to do with cancer or just anything else period. We are not afraid to talk as you will find out soon enough, and there are an incredible amount of people in here with an incredible amount of information and also an incredible amount of Faith...God Bless you in your journey.....don't be a stranger

    Thank You
    oh buzzard, you made my day. you are a angle that i needed, as i was reading i could almost see you there talking to me. does the nurse come to your home after surg. to help you?
  • Schatzie
    Schatzie Member Posts: 6
    #13
    hollyberry said:

    Plumbing
    Hi Schatzie,
    I have had a permanent colostomy for about a year now; there is a psychological adjustment time, but you will get used to it and if you have good help from nurses, you will do just fine
    I decided to irrigate my ostomy within a couple of months of having surgery and am very happy with my results; I spend 45 minutes irrigating and am stool-free for 48 hours. I only wear a patch ( kinda like a band-aid) or a small stoma cap. You can find info on this and many other ostomy issues at www.uoaa.org; they were life-savers for me.
    Good luck and God bless,
    hollyberry

    Talk to my Dr.
    Thank you hollyberry for sharing, i have not been told of this stoma cap but i sure am going to check it out. will not hurt to ask lol god bless you. oh i will have mine done 1-29 so please keep me & my family in your prayers.
  • Schatzie
    Schatzie Member Posts: 6
    #14
    taraHK said:

    Not so bad
    Hi. I am sorry that you are facing this....

    Everyone's different but I wanted to share my experience. I was diagnosed with Stage III rectal cancer 6 years ago. My tumor was very low....and I ended up having a permanent colostomy. Of course, it was a big psychological adjustment. But, I can tell you in all honesty, it is "no big deal" today. I can do everything I did before (including hiking, swimming, jacuzzi), wear almost everything I did before (OK, no bikini -- but I'm 50 now! not an option anyway!). And, if you'll excuse me bringing this up, have a good "intimate life". I agree with Vinny that you need to have a good colostomy nurse/specialist. They are a fantastic resource. I also frequented a couple of web-based discussion boards which were devoted to individuals with ostomies -- they were a godsend (like this one -- full of both practical suggestions and emotional support). Please let me or us know if you have specific questions or if there is anything we can help/address.

    Tara

    thank you
    surg. day 1-29 please keep us in your prayers, thank you you helped me alot
  • jillpls
    jillpls Member Posts: 238
    #15
    had one for 7 months
    Hi i had my iliostomy for 7 months during treatment. The first 3 months were hard but after that I did get used to it. There are times I'd rather have that then the bowel issues I have during treatment. Once used to it you wont' find it to be a problem I'm sure. God bless you and stay positive.
  • hollyberry
    hollyberry Member Posts: 173
    #16
    Nurses
    Schatzie,
    You can get nurses to come to your home; just ask your surgeon or primary care doc. They are so helpful and can get you comfortable with measuring and cutting bags, as well as helping you find good products and suppliers. I order my supplies online and have never had a problem( much more discreet than going to medical supply store and more products available). You are in my prayers; I am sure you will do fine once you get past the first few changes.
    God bless,
    Hollyberry

Discussion Boards