treatable but colostomy bag for life

Keeley200
Keeley200 Member Posts: 6
edited March 2014 in Colorectal Cancer #1
Hi,

Thanks once again for all your kind words. After what felt like a lifetime of waiting my mum finally saw the Oncologist today and got her results from the CT and MRI Scan etc. The cancer is advanced. There is a LOT in her bowel and her rectum and the muscles of her rectum. My mum will need a couple of months of radiotherapy and then they will do an operation to remove her bowel and a lot of her rectum and she will have a colostomy bag for life. When we received this news it was bad but also a relief as it is treatable and I was really expecting them to say the worst.. that they couldn't treat it and she would have a few months to live but at the same time I know my mum will be terrified at the thought of wearing a colostomy bag for life. As soon as we got home my mum wanted a drink which is understandable but she kept drinking and drinking until she was very drunk (which i guess is normal in this situation). She said tomorrow she will stop drinking and eat healthy etc but tonight she needed a drink which I understand. After everyone had left she spoke to me about it and asked me how I felt. I told her that I am so grateful that they can treat it and although difficult times lay ahead we can get through it. She asked me how she can live with a colostomy bag and how she would ever feel attractive again. I told her things will be difficult for a while but we can get through this and the main thing to concentrate on is that it is treatable. She shouted at me a lot and told me I am not in her shoes and I don't know how she is feeling. She is angry with the world and I am a terrible, insensitive person but I really don't know what to say. Part of me is so relieved because my mum will live!!! But the other part of me is scared how my mum will cope with a colostomy bag. I just don't know what to say or do for the best.. but I do know although my mum is sad and angry.. things could have been so much worse. At least it is treatable. I have decided to take your advice and I will go see my doctor tomorow as I am not sleeping or eating and constantly feel on the edge and keep having panic attacks and I need to be strong for my mum.. if some medicine can make me feel better I will take it so I will be able to care better for my mum. I lived in Italy and made my life there before we found out about the cancer and since coming home to UK I have lost my job, my house and my boyfriend but all I want is for my mum to be ok and happy that is all I want more than anything. Sometimes I wish so much I could swap places with her.. I hate seeing my mum hurting. Yesterday was my mum's 50th Birthday and although we tried to celebrate the mood just fell flat so next year we will celebrate her 51st birthday with a huge party!

Comments

  • crazylady
    crazylady Member Posts: 543 Member
    colostomy
    Hi,

    I have a permanent colostomy and have had it for over 4 years. Once you get used to it it is not a big deal and no one else even knows you have it unless you tell them. I am able to do everything that I did before the colostomy. I just make sure to carry supplies with me in case I need them. Occasionally I spring a leak which can be embarrasing, but you learn to laugh about it. It is a shock when you first learn you have to have one, but in the end it really isn't anything to worry about, at least that's my perception.

    Please share this with you Mom.

    Jamie
  • Keeley200
    Keeley200 Member Posts: 6
    crazylady said:

    colostomy
    Hi,

    I have a permanent colostomy and have had it for over 4 years. Once you get used to it it is not a big deal and no one else even knows you have it unless you tell them. I am able to do everything that I did before the colostomy. I just make sure to carry supplies with me in case I need them. Occasionally I spring a leak which can be embarrasing, but you learn to laugh about it. It is a shock when you first learn you have to have one, but in the end it really isn't anything to worry about, at least that's my perception.

    Please share this with you Mom.

    Jamie

    I will of course share your
    I will of course share your kind words with my mother. My mum keeps asking me how she will ever feel sexy again but I know she can ( she is a sexy lady :). I will tell her your experiemce. I guess it is normal to thimk like that at first. but also I need to know. Does it hurt? How long did it take you to get used to it? sorry for the many questions but I don't know much about it. thank you so much for replying.
  • kristasplace
    kristasplace Member Posts: 957 Member
    Ostomies
    Hello! I'm very sorry for what your Mother has to go through. She definitely needs to get onto this site. It will be a HUGE comfort for her to know how many others will relate to what she's going through. I have an ileostomy from my resection surgery. It's not supposed to be permenant, but i'm having a hard time with insurance, docs, and all that other crap to get it reversed. I have to be honest that i hate the ileostomy. It itches and/or hurts all of the time, and the bag bursts a lot. I did get used to the bursting, and no longer burst into tears when it happens, but i think i'm different than most people who have one. I'm not very tolerant of it. However, i do realize the fact that it saved my life, and have come to terms with having it. Doesn't mean we have to like it, though!

    A colostomy is different from an ileostomy in that her stools will be more solid. An ileostomy is attached at the small intestine, and a colostomy is attached to the large. The large intestines is where moisture is reabsorbed, so when she does have an accidental leak, or burst, it won't be as messy. The other thing i've heard about colostomies is that depending on where her stoma is located, she may learn to control output. I would look online for special ostomy supplies, such as belts that fit over the stoma so she can wear bathing suits, and tight fitting clothing without the bag. As far as feeling sexy? That does take a little time. Eventually, she will again. My boyfriend is completely used to mine, and even changes my bag for me sometimes, and cleans me up when i have accidents. Believe it or not, he still wants sex! lol!

    Send your Mother my best wishes, and many hugs to you!
    Krista
  • standbyme
    standbyme Member Posts: 41
    colostomy
    Hi,

    My husband has had a colostomy for over two years. It is only a minor inconvenience. He has never had a leak or any such problem. He wears a belt over it and you can't tell it is there. He would rather not have it but it is okay when you consider the alternative. I take ativan occasionally when I can't sleep or feel panicky.

    Good luck....Judy
  • cboo1974
    cboo1974 Member Posts: 56
    Hang in
    HI Keeley, I hope you are doing better than you were the first night you came into the chat room. You need to keep your strength and sanity to help your mum. I'm sooooooo glad to hear that your mum can be treated. Brian (blverrette) and I have been so worried about the 2 of you. Mum needs time to come to grips with what is and will happen to her. Give her the time she needs and be there to support her. I'm sorry that your life in Italy fell apart, especially with yur boyfriend. Guess it was not meant to be because if it was he would have stuck by your side and helped you through this difficult time. Someone will come along who will do that for you just put your faith in God. God brought you back home for a purpose and right now that is to help your mum and sisters. What the future holds is in Gods hands. Please come back to the chat room we all miss you and worry about you.
    Cindy
  • vinny3
    vinny3 Member Posts: 928 Member
    colostomy
    Hi,

    I have had a permanent colostomy for about 2 1/2 years. The thought of it initially was overwhelming and I thought too that my life would be ruined. The most difficutl part for me was just at first as they use a clear bag to begin with. As soon as possible switch to an opaque bag as it makes a big difference. A good ostomy nurse is very, very helpful. Once used to it it is not a big deal. Sure, it would be nice not to have it but I do all my usual activities and most people don't know I have it. Occasionally the seal can break and there is a leak but one learns how to prevent that and it has been very infrequent. It is important not to lift anything heavy- about 10 lbs or so- as the muscle has been cut through and heavy lifting can bring on a hernia at the stoma site. I did develop one and now wear a belt to help prevent it from getting any worse as I find it impossible to live the way I want to with only lifting 10 lbs. It could be helpful to get such a belt as soon as the healing has taken place and the stoma size is stable. The whole thought of having cancer and then what one goes through is overwhelming but hang in there in giving your support. Your mother is indeed very lucky to have you in her corner.

    ****
  • Kodie
    Kodie Member Posts: 7
    My two cents
    Hi Keeley,

    I'm sorry to hear about your mum and she is fortunate to have such wonderful support from you. It sounds like you have turned your life up side down to be with her, but family is all we have and you can bet if the shoe were on the other foot, your mum would move heaven and earth for you.

    I wanted to help if I can. I have colorectal cancer and had a temporary ostomy for 9 months. I was very fortunate that so far my reversal has worked. It is overwhelming at first and I even have a husband that is a nurse specializing in wounds and ostomies. This is what I learned: she absolutely has to have an ostomy nurse come out and teach her how to take care of the ostomy (hopefully her insurance will cover home visits), next she should try various equipment, if this is for life, she should experiment. I tried at least half a dozen different types of bags, adhesives, etc. until I found one that worked best. The equipment is not expensive on line if her insurance won't pay to experiment. She should always make sure she has a change of equipment and a change of clothes when she goes out, I always kept everything in my car. Accidents happen, but colostomies are not nearly as messy as ileostomies. If she is computer literate, have her do a lot of research, the internet is a great tool to learn and share information. As for feeling sexy, this is a tough one. I think as long as she feels confident in herself and can remind herself that the alternative is not desirable, she'll be ok. There are a couple of web sites that offer sexy lingerie to wear over the bag, this might help. Please let me know if I can answer any questions as I have a husband that knows just about everything about ostomies.

    Take care, Pearl
  • Get a second opinion
    I was told by the first surgeon that I saw that a permanent colostomy was my only option. I discussed this with my oncologist and asked him for the names of surgeons who might recommend a more conservative approach. I really didn't think that I would have any choices since my tumor was so low in the rectum. My first surgeon did not offer an option because he was not capable of doing the procedure. It requires specialized education. Well, I did find a surgeon who took the conservative approach and despite the fact that I needed a temporary ileostomy while my colon healed, she was able to reconnect my bowel so that I did not need a permanent colostomy. I did not have enough descending colon left to do a J Pouch procedure so it took longer than normal to retrain my bowel to function somewhat normally. I have seen posts on this site from people who have had a J Pouch and they can give you more info on that procedure. I am not in any way saying that this procedure would be a possibility for your Mom, but I highly recommend investigating it. Getting a second opinion is certainly her right. If it is not an option, at least she will know that she asked. By the way, I had the ileostomy for 8 months . I didn't like it but I could live with it. My prayers are coming your way. Take care of yourself and try to understand that your Mom is mad at the disease and not at you. -Sharon
  • dukeofearl
    dukeofearl Member Posts: 1

    Get a second opinion
    I was told by the first surgeon that I saw that a permanent colostomy was my only option. I discussed this with my oncologist and asked him for the names of surgeons who might recommend a more conservative approach. I really didn't think that I would have any choices since my tumor was so low in the rectum. My first surgeon did not offer an option because he was not capable of doing the procedure. It requires specialized education. Well, I did find a surgeon who took the conservative approach and despite the fact that I needed a temporary ileostomy while my colon healed, she was able to reconnect my bowel so that I did not need a permanent colostomy. I did not have enough descending colon left to do a J Pouch procedure so it took longer than normal to retrain my bowel to function somewhat normally. I have seen posts on this site from people who have had a J Pouch and they can give you more info on that procedure. I am not in any way saying that this procedure would be a possibility for your Mom, but I highly recommend investigating it. Getting a second opinion is certainly her right. If it is not an option, at least she will know that she asked. By the way, I had the ileostomy for 8 months . I didn't like it but I could live with it. My prayers are coming your way. Take care of yourself and try to understand that your Mom is mad at the disease and not at you. -Sharon

    colorectal cancer







    tell mum to cheer up all is not lost. I have a permanent eliostomy which requires much mor3e care than a colon ostomy and I have learned to kive with it quite well. When I was told that I would have to have one for life, I was ready to end it all however, it's not half as bad as I expected. I've been wearing one for seven years and hope for many more. good luck and god bless
  • Buzzard
    Buzzard Member Posts: 3,043 Member

    colorectal cancer







    tell mum to cheer up all is not lost. I have a permanent eliostomy which requires much mor3e care than a colon ostomy and I have learned to kive with it quite well. When I was told that I would have to have one for life, I was ready to end it all however, it's not half as bad as I expected. I've been wearing one for seven years and hope for many more. good luck and god bless

    Permanent Ostomy
    I have a permanent ostomy and it gives me no problem at all. The feeling of feeling sexy is how she approaches it with herself. She will do fine, she has a great caregiver and a lot to live for. She has to get over the initial shock and that will take time but I feel great and I was in the same boat. Give her and yourself a big hug from me......God Bless you all...
  • Jimbob-
    Jimbob- Member Posts: 46
    Buzzard said:

    Permanent Ostomy
    I have a permanent ostomy and it gives me no problem at all. The feeling of feeling sexy is how she approaches it with herself. She will do fine, she has a great caregiver and a lot to live for. She has to get over the initial shock and that will take time but I feel great and I was in the same boat. Give her and yourself a big hug from me......God Bless you all...

    Permanent Colostomy....
    Hello Keeley's Mom;

    I have a Permanent Colostomy as a result of having colorectal Cancer. Three and a Half years now. Remember it is better to have a Bag than be in a Box.

    about a year after My surgery I started irrigating, Cleansing out the bowel sort of like giving yourself an enema through the etoma. I do this every three days and am poop free in the interem. I sometme wear a patch which looks like a bandaid over the stoma.

    since July I have been in Vegas, Been on a Cruise to the Carib, visited relatives in Ohio, children in Atlanta, been to SC twiceand three div one Football games. The colostomy bag does not slow me down.

    The wife and I also have out intimate moments, still the same as before, I still have to catch her in the mood..

    Once you get used to appliance management you will be just fine.

    Jimbob