Surgery soon

DMurphy87
DMurphy87 Member Posts: 5
My mom was diagnosed in March with rectal cancer. At the time we thought after chemo and radiation she would be able to have a minor surgery that didn't require her to wear a permanent colostomy bag. Well last Tuesday we were told she had to have her whole rectum removed and will have to wear a bag for the rest of her life. I understand that removing the cancer will save my moms life but I am just scared for her. I don't show her this while we are together but I am. And I know she is too. I just wish there was a way to not have to wear the bag forever. If anyone has had this before or had to deal with a family member who has, do you have any suggestions on how to cope and deal with this situation? Thank you in advance.

Comments

  • sephie
    sephie Member Posts: 650 Member
    get 2nd opinion
    could you get a 2nd opinion?? that will make you feel better that there is nothing else to do. sephie
  • eihtak
    eihtak Member Posts: 1,473 Member
    Surgery
    I am so sorry for your moms situation, but fear not. I am 53yrs old now amd about a year and a half ago I was diagnosed with Stage3B Anal Cancer. I also received chemo/rad but although did not need anal surgery, I did require a colostomy bag due to size/location of my tumor. It was to be temporary, but due to permanent radiation dammage, is now for keeps. It took several months, but I have become very comfortable with the whole situation. I do watch what and when I eat pretty closely, as the digestive system works a bit differently, but it is very manageable. I am active with my grandkids, take a yoga class, and am able to do most all I did before. If I want to be super disciplined on what I eat, I am able to leave the bag off for 6-7 hrs and just cover the stoma (opening) with a large square bandage. I do wear looser, longer, style shirts rather than clingy ones, but that was a minor adjustment. Again, help her be patient, the colon is trainable to work on her schedule, but just as it takes time to train a toddler, it will take some time. There is a great site for people with ostomies... C3Life...with lots of helpful advice. Also, most areas have what is called a stoma nurse, please find one to help you/her adjust. There are lots of different brands of bags/products to use and not all are the same. I tried several different kinds before finding the best for me. Please keep me posted on how all is going and with any questions that you may have. As always, all in my prayers.
  • DMurphy87
    DMurphy87 Member Posts: 5
    sephie said:

    get 2nd opinion
    could you get a 2nd opinion?? that will make you feel better that there is nothing else to do. sephie

    Thank you so much
    I really appreciate the advice for my mom. She has decided to not get a second opinion though. Her surgery date will be on July 18 2012.
    Thank you so much for your response.
  • DMurphy87
    DMurphy87 Member Posts: 5
    eihtak said:

    Surgery
    I am so sorry for your moms situation, but fear not. I am 53yrs old now amd about a year and a half ago I was diagnosed with Stage3B Anal Cancer. I also received chemo/rad but although did not need anal surgery, I did require a colostomy bag due to size/location of my tumor. It was to be temporary, but due to permanent radiation dammage, is now for keeps. It took several months, but I have become very comfortable with the whole situation. I do watch what and when I eat pretty closely, as the digestive system works a bit differently, but it is very manageable. I am active with my grandkids, take a yoga class, and am able to do most all I did before. If I want to be super disciplined on what I eat, I am able to leave the bag off for 6-7 hrs and just cover the stoma (opening) with a large square bandage. I do wear looser, longer, style shirts rather than clingy ones, but that was a minor adjustment. Again, help her be patient, the colon is trainable to work on her schedule, but just as it takes time to train a toddler, it will take some time. There is a great site for people with ostomies... C3Life...with lots of helpful advice. Also, most areas have what is called a stoma nurse, please find one to help you/her adjust. There are lots of different brands of bags/products to use and not all are the same. I tried several different kinds before finding the best for me. Please keep me posted on how all is going and with any questions that you may have. As always, all in my prayers.

    Thank you so much
    Thank you for your comments I will relay these messages to her. Her surgery is tomorrow July 18 2012 and she is very nervous. I was told she'd have to be there for about 5 days. which is hard for my mom to sit and do nothing for 5 mins let alone 5 days. Hopefully she listens to the DRs and relaxes as much as she can. I know this will be tough for her but this is what she has decided to do, so all I can do is be as supportive as possible. I hope that she can adjust her diet as well. I am going to look up a stoma nurse in our area that can help her with things I don't about wearing a bag.

    Thank you for your kind words. You are very nice I promise to keep you posted on things.
  • eihtak
    eihtak Member Posts: 1,473 Member
    DMurphy87 said:

    Thank you so much
    Thank you for your comments I will relay these messages to her. Her surgery is tomorrow July 18 2012 and she is very nervous. I was told she'd have to be there for about 5 days. which is hard for my mom to sit and do nothing for 5 mins let alone 5 days. Hopefully she listens to the DRs and relaxes as much as she can. I know this will be tough for her but this is what she has decided to do, so all I can do is be as supportive as possible. I hope that she can adjust her diet as well. I am going to look up a stoma nurse in our area that can help her with things I don't about wearing a bag.

    Thank you for your kind words. You are very nice I promise to keep you posted on things.

    Surgery
    I will be thinking of both you and her and praying all goes well. My first nurse in the hospital after my surgery was a nut, nice but relatively clueless on colostomy care. I had worked in a nursing home for 12yrs when I was younger and felt I had more experience in that area than her. Later I had a new nurse that was a huge help and I will be forever thankful for the change in shifts! If nothing else, dig deep for patience, as I said before it takes time for the body to adjust, but it will. Finding a stoma nurse will be a big help, I can call mine any time for any concern. Good luck tomorrow.
  • torrance
    torrance Member Posts: 118
    DMurphy87 said:

    Thank you so much
    Thank you for your comments I will relay these messages to her. Her surgery is tomorrow July 18 2012 and she is very nervous. I was told she'd have to be there for about 5 days. which is hard for my mom to sit and do nothing for 5 mins let alone 5 days. Hopefully she listens to the DRs and relaxes as much as she can. I know this will be tough for her but this is what she has decided to do, so all I can do is be as supportive as possible. I hope that she can adjust her diet as well. I am going to look up a stoma nurse in our area that can help her with things I don't about wearing a bag.

    Thank you for your kind words. You are very nice I promise to keep you posted on things.

    prayers
    You and your mom are in my prayers as you go through another hoop. You are doing the right thing by reaching out for your mom and for your own peace of mind. There is so much experience here for you to gain information to get through this. So much easier when you have the insights from those that have gone through what you are experiencing. Please know that we are by your side as you are by your moms tomorrow. Keep us posted as you can.

    Joanne
  • DMurphy87
    DMurphy87 Member Posts: 5
    torrance said:

    prayers
    You and your mom are in my prayers as you go through another hoop. You are doing the right thing by reaching out for your mom and for your own peace of mind. There is so much experience here for you to gain information to get through this. So much easier when you have the insights from those that have gone through what you are experiencing. Please know that we are by your side as you are by your moms tomorrow. Keep us posted as you can.

    Joanne

    thank you Joanne
    Thank you so much for your prayers for us. Her surgery went okay. There was a little more that had to be done in order to remove her tumor. She is recovering pretty okay now except for her legs not working normally. She is supposed to go home tomorrow. I just want her to be safe without worrying. This site is just so amazing. I have read her y'alls messages and she was so thankful for how nice everyone is. Just thank you all so much. Ill keep everyone posted as she adjusts to this new part of life.
  • DMurphy87
    DMurphy87 Member Posts: 5
    eihtak said:

    Surgery
    I will be thinking of both you and her and praying all goes well. My first nurse in the hospital after my surgery was a nut, nice but relatively clueless on colostomy care. I had worked in a nursing home for 12yrs when I was younger and felt I had more experience in that area than her. Later I had a new nurse that was a huge help and I will be forever thankful for the change in shifts! If nothing else, dig deep for patience, as I said before it takes time for the body to adjust, but it will. Finding a stoma nurse will be a big help, I can call mine any time for any concern. Good luck tomorrow.

    you are such a blessing
    Thank you so much for your prayers. My mom had her tumor removed last week. She is still in the hospital. She is currently having trouble walking because of the position she was in during surgery. So getting around at home without help will be a challenge for a while. The good news is today was the first day her bag decided to work. The stoma nurse was so nice. And we were told to call her as much as needed. She also informed us of a support group for colostomy bag users . This will be a great thing as my mom adjusts to this life change. I am thankful to have found the support through this site. We both need as mush as we can get. Thank you again and ill keep you posted.
  • eihtak
    eihtak Member Posts: 1,473 Member
    DMurphy87 said:

    you are such a blessing
    Thank you so much for your prayers. My mom had her tumor removed last week. She is still in the hospital. She is currently having trouble walking because of the position she was in during surgery. So getting around at home without help will be a challenge for a while. The good news is today was the first day her bag decided to work. The stoma nurse was so nice. And we were told to call her as much as needed. She also informed us of a support group for colostomy bag users . This will be a great thing as my mom adjusts to this life change. I am thankful to have found the support through this site. We both need as mush as we can get. Thank you again and ill keep you posted.

    Thinking of you....
    Sorry about your moms difficulty walking. Its amazing how they sometimes have to position a person for surgery, good thing to be knocked out I guess! I'm sure she is sore now but hopefully feeling better soon. I'm glad you have a stoma nurse that you like, don't hesitate to use her. The colostomy will take some adjusting and you are not expected to know the answers to any questions you may have, remember this is not something most people grow up dealing with so ask someone who knows. In time it will become second nature to care for, not necessarily something you like, but also not as bad as some think. Everyone has something they deal with, some are internal issues and some external, on the whole scale of what our lives could be, a colostomy bag is really a very minor thing.....be patient, your mom will get through this, and is very lucky to have you for support. I'll keep you as always, in my prayers.