what is too long for iliostomy bag?

musiclover
musiclover Member Posts: 242
edited March 2014 in Colorectal Cancer #1
My friend went from not being able to keep a bag on or from leaking for more than two days to having the latest one on for two weeks. Since he is going to a county hospital and there is only one iliostomy nurse for the entire hospital and she is only there on Mondays (basically her advice initially was worthless and he was in tears the first week of having the bag), I thought I would ask you experts out there your thoughts on leaving on a bag for this long. He finally got it to stay on by using benzoid (spelling?). This has helped him go from feeling demoralized and depressed to having some dignity and excepting it quite well. This is the 15th day he has had it on. Should he just continue to keep it on if it is working or should he change it anyway? Is he at risk of getting an infection? He is fastidious and stays very clean. I would love to hear your comments. Thanks! Kathryn

Comments

  • fedester
    fedester Member Posts: 753
    hi kathryn,
    the longest i had my bag on was about 2 weeks. the seal than broke. i would say if he keeps it clean the bag that is and it is not bothering him see how long it stays on. wil he need this perm or temp. i had a resection after 3 months.
    hope this helps.
    all the best
    bruce
  • musiclover
    musiclover Member Posts: 242
    fedester said:

    hi kathryn,
    the longest i had my bag on was about 2 weeks. the seal than broke. i would say if he keeps it clean the bag that is and it is not bothering him see how long it stays on. wil he need this perm or temp. i had a resection after 3 months.
    hope this helps.
    all the best
    bruce

    Thanks for your reply. Mark has a temp. iliostomy although they just found out his rectal cancer spread to his liver meaning more chemo and surgery so it may be some time before this is reversed. I wish he had online access so he could benefit from the kind words of others in his condition. I will forward your thoughts to him. Thanks so much!
    Kathryn
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member

    Thanks for your reply. Mark has a temp. iliostomy although they just found out his rectal cancer spread to his liver meaning more chemo and surgery so it may be some time before this is reversed. I wish he had online access so he could benefit from the kind words of others in his condition. I will forward your thoughts to him. Thanks so much!
    Kathryn

    Kathryn,

    Mine spread to my liver, too. I was stage 4, and 5 yrs clear this coming October. KEEP THE FAITH! There is hope!

    Stacy
  • musiclover
    musiclover Member Posts: 242

    Kathryn,

    Mine spread to my liver, too. I was stage 4, and 5 yrs clear this coming October. KEEP THE FAITH! There is hope!

    Stacy

    Stacy, Thanks for the post. Can you tell me more about your journey, i.e. how you were treated for the liver? When you discovered that it had spread? Chemo regimen after your rectal surgery? Anything else you can offer would help Mark so much. Everyone has been so helpful making this a lot easier for Mark to face this very scary ordeal. Thanks! Kathryn
  • Moesimo
    Moesimo Member Posts: 1,072
    I change my colostomy bag every 2 - 3 days. I wouldn't keep a bag on for 2 weeks, I wouldn't want the skin to breakdown near the stoma. I would tell him to change the bag at least weekly. That is just my opinion.

    Maureen
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member

    Stacy, Thanks for the post. Can you tell me more about your journey, i.e. how you were treated for the liver? When you discovered that it had spread? Chemo regimen after your rectal surgery? Anything else you can offer would help Mark so much. Everyone has been so helpful making this a lot easier for Mark to face this very scary ordeal. Thanks! Kathryn

    Kathryn,

    I'd LOVE to tell my story. I honestly believe that I had this experience in order to help others on their journeys. I found out mine had spread to my liver when I came out of surgery. The doc found it while I was opened up on the operating table. What was to be a short surgery ended up being a 10 hr one....kinda like Gilligan's Island "3 hour tour" thing! I digress....sorry! ANYWAY....woke up with an ileostomy. THAT was fun! I actually got used to it, as weird as that sounds, and kinda even missed it after the reversal. In addition to removing 40% of my liver, the doc also took the gallbladder and the original tumor in the colon. Backing up a few steps....I had 6 weeks of chemo and radiation prior to the surgery, in an attempt to shrink the tumor. I had, and still have, the port to get chemo. Did continuous pump of chemo prior to surgery, never missed a day of work. No side effects, nothing. One time in my life that I was happy to welcome "boring"! After the surgery, I had more chemo to attack the little microscopic little nippers that may have been still out there. Again, no side effects. After 6 months of post-surgery chemo, I made my oncologist a deal....if I had a clean PET scan, then I'd be done with chemo, and get the ileostomy reversed. I won. BIG TIME! Had the reversal done 9 months after my original surgery, and no complications since. Every colonoscopy and CT scan since then has been clear.

    So, there you have it! You can also e-mail individual users on this site, too, from their web pages. Feel free to do so anytime I can help. I mean it.

    All my best,
    Stacy