For those with bleeding from radiation proctitis

LaCh
LaCh Member Posts: 557

 

Not recommending anything for anybody else, I'm simply relating my own experience so that others can put it into their mental toolbox, to be used if desired and deemed prudent. I was treated with argon gas to cauterize the area affected by radiation proctitis, which was the entire area of real estate in there. Argon gas is used when the area is diffuse and the tissue is friable. It creates scarring, which, in my case, has stopped the bleeding. It took a week and a half post tx for the scarring to form and the bleeding to stop, but it has. If another area needs tx, which is likely, I'll consider it, and the only reason that I'd either decline it or delay it is because I'm not worried about the tumor returning (so there's no need to look for the source of the bleeding) and the bleeding is an annoyance, but nothing more. So I'd weigh all things and decide, but for those with a different set of concerns or a different pov, argon plasma coagulation (it's medical call-name) worked for me.

Comments

  • pializ
    pializ Member Posts: 508 Member
    LaCh

    Thanks for that LaCh.

    I am having an examination under anaesthetic tomorrow for similar symptoms. I will bear this information in mind, though I doubt it will be available to me here in the UK.  My experience here is that I have had to fight for care from diagnosis to follow up. Despite the recommended follow up during the first 2 years post treatment being 3 monthly, I was not going to have a follow up physical examination for 8 months.Hmmm!  My consultant's secretary was amazed??? at my knowledge base. Well, as I informed her, my life has literally depended on it.

    I am glad to see you are doing ok, maybe not perfect, but sufficiently well  that you & your dog can look forward to Spring walks in Central Park.

    Thanks again for sharing

    Best wishes

    Liz

  • mp327
    mp327 Member Posts: 4,440 Member
    LaCh

    Thanks for posting this information.  As you know from being on this site, a lot of us deal with bleeding post-treatment.  I hope you are doing well!

  • LaCh
    LaCh Member Posts: 557
    mp327 said:

    LaCh

    Thanks for posting this information.  As you know from being on this site, a lot of us deal with bleeding post-treatment.  I hope you are doing well!

    full disclosure

    sorry everybody. Unfortunately, my run of blood free days has come to a sorry end. BUT... that's not to say that the treatment might not last longer for others. To me, the bleeding hasn't even risen to the inconvenience level; it's just there, it doesn't bother me, I just note it and go on with my day, so I don't really mind it. A word of caution; the argon gas can make you feel nauseated and queasy for a few hours afterwards.

    But ...don't judge your (potential) experience by my experience, not in terms of the nausea and expecially not in terms of the results. Everyone's different.  If you're having something that requires sedation anyway... what's the difference? Get a blast of argon gas lit up in the nether regions and see what happens. Your blood-free run might last longer than mine.

  • Marynb
    Marynb Member Posts: 1,118
    pializ said:

    LaCh

    Thanks for that LaCh.

    I am having an examination under anaesthetic tomorrow for similar symptoms. I will bear this information in mind, though I doubt it will be available to me here in the UK.  My experience here is that I have had to fight for care from diagnosis to follow up. Despite the recommended follow up during the first 2 years post treatment being 3 monthly, I was not going to have a follow up physical examination for 8 months.Hmmm!  My consultant's secretary was amazed??? at my knowledge base. Well, as I informed her, my life has literally depended on it.

    I am glad to see you are doing ok, maybe not perfect, but sufficiently well  that you & your dog can look forward to Spring walks in Central Park.

    Thanks again for sharing

    Best wishes

    Liz

    Liz
    I am glad that you are being seen tomorrow. Good luck! You will be in my thoughts and prayers.
  • Marynb
    Marynb Member Posts: 1,118
    LaCh said:

    full disclosure

    sorry everybody. Unfortunately, my run of blood free days has come to a sorry end. BUT... that's not to say that the treatment might not last longer for others. To me, the bleeding hasn't even risen to the inconvenience level; it's just there, it doesn't bother me, I just note it and go on with my day, so I don't really mind it. A word of caution; the argon gas can make you feel nauseated and queasy for a few hours afterwards.

    But ...don't judge your (potential) experience by my experience, not in terms of the nausea and expecially not in terms of the results. Everyone's different.  If you're having something that requires sedation anyway... what's the difference? Get a blast of argon gas lit up in the nether regions and see what happens. Your blood-free run might last longer than mine.

    LaCh
    Thanks for the information!
  • pializ
    pializ Member Posts: 508 Member
    Marynb said:

    Liz
    I am glad that you are being seen tomorrow. Good luck! You will be in my thoughts and prayers.

    Marynb

    Thank you for your kind thoughts. 

    I have been wondering about you and where you are in your journey.

    It is 1.45 am. I have had a very productive evening distracting myself. I have bulk cooked tiL I can cook no more. Oh well, my freezer is full again lol.

    Take care & keep us posted.

    Liz

  • pializ
    pializ Member Posts: 508 Member
    pializ said:

    Marynb

    Thank you for your kind thoughts. 

    I have been wondering about you and where you are in your journey.

    It is 1.45 am. I have had a very productive evening distracting myself. I have bulk cooked tiL I can cook no more. Oh well, my freezer is full again lol.

    Take care & keep us posted.

    Liz

    Marynb

    Just an uodate.

    Consultant confirmed symptoms are from radiation damage. He has now said that as I will be seen in 4 months 'due to MY concerns'. 

    So far, so good.

    Kind regards,

    Liz

  • mp327
    mp327 Member Posts: 4,440 Member
    pializ said:

    Marynb

    Just an uodate.

    Consultant confirmed symptoms are from radiation damage. He has now said that as I will be seen in 4 months 'due to MY concerns'. 

    So far, so good.

    Kind regards,

    Liz

    Liz

    I am glad your doctor was able to pinpoint the cause of your bleeding.  Unfortunately, this seems to be common among us and part of the new normal.  I hope this gives you peace of mind knowing that it's nothing more serious.

  • pializ
    pializ Member Posts: 508 Member
    mp327 said:

    Liz

    I am glad your doctor was able to pinpoint the cause of your bleeding.  Unfortunately, this seems to be common among us and part of the new normal.  I hope this gives you peace of mind knowing that it's nothing more serious.

    Martha

    Well, I hoped it was radiation damage & can see so many others suffer the same.& thankfully that's what it is.

    I know none of us want collateral damage, but there is, at this time anyway,  not much in the way of options to treat AC. I was stage 3A, and due to my right ovary masquerading as a lymph node which could have heen involved (no PET scan for AC here), I had a lot of me irradiated,  so I am not surprised to have some problems.

    But, still NED! 

    Thank you Martha

    Liz x

  • LaCh
    LaCh Member Posts: 557
    Marynb said:

    LaCh
    Thanks for the information!

    to all

    Can't speak for others but only for myself. I don't know why I'm not worried about a recurrance when many other people are, but I'm just not. The tumor is gone and my assumption is that it'll stay "gone." With that in mind, I think I'm going to lay off the flex sigmoidoscopies for a while; I only did this last one at my gastroenetrologist's urging, and while they're no big deal, I'd rather be doing something else.  A little blood isn't going to kill me. I just note it and go on with my day, which I think a lot of people here do.  Thinking about my butt is getting old. 

    Anyway, Cheers.  

  • mp327
    mp327 Member Posts: 4,440 Member
    LaCh said:

    to all

    Can't speak for others but only for myself. I don't know why I'm not worried about a recurrance when many other people are, but I'm just not. The tumor is gone and my assumption is that it'll stay "gone." With that in mind, I think I'm going to lay off the flex sigmoidoscopies for a while; I only did this last one at my gastroenetrologist's urging, and while they're no big deal, I'd rather be doing something else.  A little blood isn't going to kill me. I just note it and go on with my day, which I think a lot of people here do.  Thinking about my butt is getting old. 

    Anyway, Cheers.  

    LaCh

    I had to chuckle a bit when I read your sentence about how thinking about your butt is getting old.  I feel that way on a daily basis!

  • LaCh
    LaCh Member Posts: 557
    mp327 said:

    LaCh

    I had to chuckle a bit when I read your sentence about how thinking about your butt is getting old.  I feel that way on a daily basis!

    thoughts...

    I used to feel that way more than I do [that the thoughts get old] but don't so much anymore because I rarely think about my butt anymore. The way I see it, every minute that I'm thinking of that, I'm not thinking about the sketch I'm working on or the book that I'm reading or the book that I'm writing. Thoughts about my butt live where they belong; in the past.  I'm lucky enough to be able to say that the tumor is cured and have no fear that it's going to return. Why squander that gift by dragging it along behind me in my present, in the form of thoughts, worry, all of that... In any case, I ran out of things to think about it a long time ago.... I thunk it to death and then I moved on.  But that's just my take.  We each find our own way....

  • sephie
    sephie Member Posts: 650 Member
    LaCh said:

    thoughts...

    I used to feel that way more than I do [that the thoughts get old] but don't so much anymore because I rarely think about my butt anymore. The way I see it, every minute that I'm thinking of that, I'm not thinking about the sketch I'm working on or the book that I'm reading or the book that I'm writing. Thoughts about my butt live where they belong; in the past.  I'm lucky enough to be able to say that the tumor is cured and have no fear that it's going to return. Why squander that gift by dragging it along behind me in my present, in the form of thoughts, worry, all of that... In any case, I ran out of things to think about it a long time ago.... I thunk it to death and then I moved on.  But that's just my take.  We each find our own way....

    moving on is the best

    lach,    my stupid butt will not let me forget it....each and every day, it hurts on left side----always has and i guess after 4 years, always will... i have to try to sit differently or take a shammy cloth to dry it off or use the hair dryer on cool.... if one particle of anything including tp is in there, it is painful....but i am grateful for whatever i can do....yes, blood does not bother me any more...well, one time it did because it was like i was flooding but that slowed down after a week....anyway....all of us are different.....give your dog a huge hug ...... i would love to have a large mastiff but too hot down here......congrats  on writing......sephie

  • Lorikat
    Lorikat Member Posts: 681 Member
    sephie said:

    moving on is the best

    lach,    my stupid butt will not let me forget it....each and every day, it hurts on left side----always has and i guess after 4 years, always will... i have to try to sit differently or take a shammy cloth to dry it off or use the hair dryer on cool.... if one particle of anything including tp is in there, it is painful....but i am grateful for whatever i can do....yes, blood does not bother me any more...well, one time it did because it was like i was flooding but that slowed down after a week....anyway....all of us are different.....give your dog a huge hug ...... i would love to have a large mastiff but too hot down here......congrats  on writing......sephie

    Years ago after childbirth I

    Years ago after childbirth I had hemmeroids.  The doctor told me to "sit on a bag" of frozen peas.  I had forgotten that untill a couple of weeks ago.  I tried it and it worked!  Eased the pain, and the litte bit of bleeding, external, I guess, stopped.  Just saying....   But will repeat  check with your Doctor first!