Colostomy vs Radiation

Anabel_Lee

I've been curious about something for awhile and decided to post this thread to get some opinions. After reading about so many long term effects of radiation, I'm wondering if anyone has chosen to have a colostomy instead. 

Back in my 20's I dated someone who had a bag due to Chrohn's and although I'm sure he would have loved not to have one, he still led a very active life. He played hockey, worked as a baliff had a busy social life and dated. 

When I hear so many stories on here and other sites about the long term effects that radiation can have, it makes me wonder if a colostomy might be an option to consider even when you aren't in a "last resort" situation. Or are there situations where you still would have to get radiation even if you got a bag after? I admit to not having much knowledge about this topic (which is why I'm so happy to be part of this site)

Im just at the beginning stages of my journey so I haven't been put in this position yet but I do remember when I first started reading about radiation, it crossed my mind if the whole thing could be avoided by a colostomy and I do know someone who currently is in this situation and wondering the same thing.

I know there are big life changes to having a bag. It's something you have to deal with daily for the rest of your life but then again, the long term effects of radiation also have to be dealt with daily.

Again, I'm not in this situation. This is just for curiousity of other's thoughts on it.

z

Anabel Lee

I finished tx on 6-30-09, and I would do the tx again, as I have a physical job and I am fine now..  

If you use the dialator or have regular sex to keep the vagina open you  will be fine.  The vagina will atrophy and shrink without use naturally.  My friends gyno said I am so sick of these shrunken vaginas, which I thought was funny.  Anyway, that seems to be my only long lasting side effect and can be resolved over time.

My choice is tx over colostomy, but if I had major issues and was given the choice of colostomy or major problems due to tx, from what I have read I know that you may live a normal life and do what ever you have always done, and I would chose colostomy.  

I wish you well, Lori

RoseC

I remember either being told

I remember either being told or reading somewhere that with a colostomy it wasn't a sure bet that all the cancer cells would be able to be eliminated. Colostomy relied on surgery to get rid of the cancer and microscopic cells may still remain. That's why the first line of defense was chemo and radiation. I also remember reading that a colostomy used to be the way anal cancer was treated until research found that the success rate was either equal or better with chemo and radiation.

Prior to treatment I would have chosen chemo and radiation rather than colostomy, just because of the bad thoughts I had about colostomies. After doing reasearch about colostomies though, and seeing some of the side effects of chemo and radiation has had on some of us, well - had I known then what I know now, I can't say for sure what I would have done.

mp327

Just my opinion--

But I can't imagine even considering a colostomy if there was a good chance that chemo/rad would rid me of cancer.  I just wouldn't go there, even in my mind, at this point.

eihtak

Anabel_Lee....

Would be a wonderful thing if life was so black and white sometimes and answers were an easy yes or no. Like I'm sure you realize side effects whether from chemo, radiation, or surgery, (colostomy) vary greatly from person to person. I do have a colostomy that was supposed to be reversed six months after radiation treatment. ( So in my situation I had or should say have a colostomy and also had chemo and radiation as well). The radiation damage has made a successful reversal not possible so it is now permanent. (3 yrs now)

Would I have chosen it "over" radiation if that was an option......probably not, but is it as bad as what many people imagine.....definately not. I do have radiation damage but it is manageable and use dilators on a fairly regular basis to help with stenosis in the vaginal area. I do have some pelvic lymphodema, but yoga and exercise seem to help with that. My internal organs have suffered some radiation damage making a future hysterectomy if needed quite complicated, but I may never need. Making some changes in my diet has not been a real issue for me either.  The ostomy surely took some getting used to and some adjustments in daily routines. There are certain foods that cause a problem for me, but I just limit them. Some clothes fit a little different as they need to hit just right where the bag is attached so as not to cause a problem, but I have that pretty well figured out. I think people have this notion that one walks around all day with a bag of (poop) hanging on there belly, when for me I almost never have anything in the bag. I have output in the morning then empty it, and a couple times through-out the day but empty it almost immediately. It lays flat and is not noticeable. I am kind of able to control it by eating at certain times and certain foods. I am active, do gentle yoga, swim, travel, play with active grandkids and am back in college. That being said though, it is a big adjustment and not everyone has the positive results that I have, and I am at risk for future hernias near the stoma, (the opening) and colon prolapse, (which I had once early on). Not to mention the huge expense for supplies when ever there is an insurance issue. The long term effects of radiation can be awful for some people and easily managed by others too.

My guess is that most doctors would recommend radiation over colostomy surgery as the effects from radiation are still considered to leave one with a better quality of life than a colostomy, yet as in my case some are just lucky enough to get both!

Be well......

katheryn

sephie

just my opinion

I have had side effects from radiation that were pretty bad but have gotten better and better ... i am at 5 years post now....but i still have them.....yes, i still have pain on my left side and i can not sit for long periods of time and cant exercise the way i used to.....but i am in the minority, i think.... I WOULD NOT DO THE COLOSTOMY FIRST....for anal cancer they cut out the entire anus and rectum and have to be careful of the vaginal wall or repair it.... it is long and hard to recover.... it is not the same as colon cancer surgery....but as you see, people do heal and do well after the surgery.... i do not want to offend nor terrify anyone at all ...i was hesitant to give my opinion due to how well many people have prospered after this surgery   .......but the protocol is to try radiation and chemo first..... just my thoughts.....also ,  I went to MD anderson which knows how to treat this horrible cancer correctly and i still had the side effects......sephie

Anabel_Lee

sephie said:

just my opinion

I have had side effects from radiation that were pretty bad but have gotten better and better ... i am at 5 years post now....but i still have them.....yes, i still have pain on my left side and i can not sit for long periods of time and cant exercise the way i used to.....but i am in the minority, i think.... I WOULD NOT DO THE COLOSTOMY FIRST....for anal cancer they cut out the entire anus and rectum and have to be careful of the vaginal wall or repair it.... it is long and hard to recover.... it is not the same as colon cancer surgery....but as you see, people do heal and do well after the surgery.... i do not want to offend nor terrify anyone at all ...i was hesitant to give my opinion due to how well many people have prospered after this surgery   .......but the protocol is to try radiation and chemo first..... just my thoughts.....also ,  I went to MD anderson which knows how to treat this horrible cancer correctly and i still had the side effects......sephie

Thanks

for all of your opinions. I've found them very interesting. I was a bit hesitant to make this post because I didn't want anyone to think I was questioning their decision for whatever approach they took. I'm happy no one took it that way.

The idea of radiation still scares me a bit. Seems like such a gamble. You do it and just cross your fingers, then wait and see what side effects happen.

But, I guess it would be the same with a colostomy, since there are some risks involved.

eihtak

sephie said:

just my opinion

I have had side effects from radiation that were pretty bad but have gotten better and better ... i am at 5 years post now....but i still have them.....yes, i still have pain on my left side and i can not sit for long periods of time and cant exercise the way i used to.....but i am in the minority, i think.... I WOULD NOT DO THE COLOSTOMY FIRST....for anal cancer they cut out the entire anus and rectum and have to be careful of the vaginal wall or repair it.... it is long and hard to recover.... it is not the same as colon cancer surgery....but as you see, people do heal and do well after the surgery.... i do not want to offend nor terrify anyone at all ...i was hesitant to give my opinion due to how well many people have prospered after this surgery   .......but the protocol is to try radiation and chemo first..... just my thoughts.....also ,  I went to MD anderson which knows how to treat this horrible cancer correctly and i still had the side effects......sephie

Hi......

Hope all are doing well.....I just want to clarify as I have had radiation but also have a colostomy,so experience with both.  There are several ways to perform ostomy surgery. Mine is called a loop ostomy and did not involve having my anus and rectum removed. I still have all my parts, they are just out of commission. Picture an opening made a couple inches from my belly button where the colon is brought through then a small opening made in the colon and stiched over like a thin cuff. So, as waste moves through it hits that exit before moving further. Works great, and quick recovery! If I should have a recurrance in the original site in the anal area I would then need to have that removed, but would again be a bit easier recovery than some as I already have a healed and working ostomy. Once again, I feel I have been blessed with an excellent health care team thinking not only about my current situation but my future health. Depending on the stage and location of a tumor, radiation is the protocol treatment but may include surgery if later stage or based on location.

I agree......we all have some level of side effects, and they seem to change up and down over time.

Be well.........

katheryn

lp1964

They recommend radiation...

...no matter what the end treatment is gonna be, because without it there is a greater chance for the cancer to spread during and after surgery. Without radiation the chance of recurrance is higher. I had radiation for my rectal cancer and when it was removed there were no living cancer cells in the specimen. That greatly increases the chance of survival. I have colostomy since October and I would lie if I said that it's easy. You have to watch what you eat and I have to go to the bathroom 20-30 times a day. Before my surgery I had a discharge which was just as inconvenient.

So I think even if some end up with colostomy the radiation is really not a question.

Laz

Anabel_Lee

lp1964 said:

They recommend radiation...

...no matter what the end treatment is gonna be, because without it there is a greater chance for the cancer to spread during and after surgery. Without radiation the chance of recurrance is higher. I had radiation for my rectal cancer and when it was removed there were no living cancer cells in the specimen. That greatly increases the chance of survival. I have colostomy since October and I would lie if I said that it's easy. You have to watch what you eat and I have to go to the bathroom 20-30 times a day. Before my surgery I had a discharge which was just as inconvenient.

So I think even if some end up with colostomy the radiation is really not a question.

Laz

Laz...

thanks for the response. I had been wondering if radiation would still be done, even with a colostomy.

eihtak

lp1964 said:

They recommend radiation...

...no matter what the end treatment is gonna be, because without it there is a greater chance for the cancer to spread during and after surgery. Without radiation the chance of recurrance is higher. I had radiation for my rectal cancer and when it was removed there were no living cancer cells in the specimen. That greatly increases the chance of survival. I have colostomy since October and I would lie if I said that it's easy. You have to watch what you eat and I have to go to the bathroom 20-30 times a day. Before my surgery I had a discharge which was just as inconvenient.

So I think even if some end up with colostomy the radiation is really not a question.

Laz

Laz......

Hi, I was thinking about you and hope you are adjusting ok after your surgery. You are right in that it is not easy, but it does become "easier" with time. I am sorry to hear that you are having output (poop) more than 20 times a day!!!! That must present some challenges for you. Are you able to adjust what or what time you eat so as to lessen that a bit, or eat something like nut butter that usually helps to thicken the stool and slow things down without causing constipation. I do hope things are manageable and you are doing well.

I happened to be in the hospital/nursing home for a few months following my surgery so was able to have a lot of help in learning how to adjust.

katheryn

lp1964

eihtak said:

Laz......

Hi, I was thinking about you and hope you are adjusting ok after your surgery. You are right in that it is not easy, but it does become "easier" with time. I am sorry to hear that you are having output (poop) more than 20 times a day!!!! That must present some challenges for you. Are you able to adjust what or what time you eat so as to lessen that a bit, or eat something like nut butter that usually helps to thicken the stool and slow things down without causing constipation. I do hope things are manageable and you are doing well.

I happened to be in the hospital/nursing home for a few months following my surgery so was able to have a lot of help in learning how to adjust.

katheryn

My output is normal.

I just have to make some major dietary changes , because I have a lot of gas, therefore the trips to the bathroom. I can't seem to digest, raw vegetables and fruits with skin. Also the typical lental, beans , onions. I probably heve to blend or juice these, because I still need fibers and vitamins.

Laz

qv62

lp1964 said:

My output is normal.

I just have to make some major dietary changes , because I have a lot of gas, therefore the trips to the bathroom. I can't seem to digest, raw vegetables and fruits with skin. Also the typical lental, beans , onions. I probably heve to blend or juice these, because I still need fibers and vitamins.

Laz

lp1964

Laz, sorry to hear the adjustment has been so difficult, I am not educated on what the recovery and after effects are but it sounds like this is a lot to handle, I will keep you in my prayers for a better adjustment in the very near future

lp1964

qv62 said:

lp1964

Laz, sorry to hear the adjustment has been so difficult, I am not educated on what the recovery and after effects are but it sounds like this is a lot to handle, I will keep you in my prayers for a better adjustment in the very near future

Thank you!

It is hard, but for now I feel healthy and I hope it stays that way.

mp327

lp1964 said:

Thank you!

It is hard, but for now I feel healthy and I hope it stays that way.

Laz

I'm glad to hear from you and it's good to know that you feel healthy!  I hope it stays that way too!  It sounds like you are making all the necessary adjustments to get along with the ostomy, but it probably just takes time.  I'm sure you are taking it all in stride--you have always had such a positive attitude about everything and it sounds like it's still intact.  Take care, my friend!

TraceyUSA

Anabel Lee

What an interesting question you pose....my first thoughts were I don't want a colostomy (and glad they didn't suggest it) but I understand your reasoning.  I did not find this site until after treatment and was "blind" to all the effects.

As someone previously stated, colostomy (plus chemo/radiation, I believe) was the "old" treatment but the standard chemo/radiation has been shown to be more effective.  That said, I've been told that the best way to treat cancer is to remove it.

I finished treatment a year ago and do have some side effects of the radiation/chemo.  These have gradually lessened and are nothing more than bothersome at times.

I think it's great that you are exploring all you options.

Thoughts, prayers and well wishes,

Tracey

pializ

TraceyUSA said:

Anabel Lee

What an interesting question you pose....my first thoughts were I don't want a colostomy (and glad they didn't suggest it) but I understand your reasoning.  I did not find this site until after treatment and was "blind" to all the effects.

As someone previously stated, colostomy (plus chemo/radiation, I believe) was the "old" treatment but the standard chemo/radiation has been shown to be more effective.  That said, I've been told that the best way to treat cancer is to remove it.

I finished treatment a year ago and do have some side effects of the radiation/chemo.  These have gradually lessened and are nothing more than bothersome at times.

I think it's great that you are exploring all you options.

Thoughts, prayers and well wishes,

Tracey

Anabel Lee

An interesting question. 

Anal cancer was treated by colostomy in the past, until the nigra protocol (chemo & radiotherapy) was developed and proved to be a more effective treatment. 

I completed treatment 15 months ago today. Do I have side effects from treatment? Well, yes. Are they tolerable? Yes.

Before I started treatment, I had read of all the potential side effects of treatment, and they scared me so much I did not want treatment.  My fear was that my quality of life would be so compromised that I would no longer be able to be 'me'. Well, I am not far off being 'me' & I am able to do mostly all of what I want. I still need to sort out some physiotherapy to strengthen my muscles which have been deconditioned not only by the treatment, but a few years of various physical problems. Am I glad I had nigra protocol rather than a colostomy (even though some side effects persist)? Again, yes. I wanted to ensure as best as posiible that they got each & every one of those cancer cells. I was stage 3A, possibly a stage 3b at the outset, and more of my small bowel needed to be irradiated than my oncologist was comfortable with (thinking about late effects). But so far so good.

Hope this helps

Liz

 

Anabel_Lee

pializ said:

Anabel Lee

An interesting question. 

Anal cancer was treated by colostomy in the past, until the nigra protocol (chemo & radiotherapy) was developed and proved to be a more effective treatment. 

I completed treatment 15 months ago today. Do I have side effects from treatment? Well, yes. Are they tolerable? Yes.

Before I started treatment, I had read of all the potential side effects of treatment, and they scared me so much I did not want treatment.  My fear was that my quality of life would be so compromised that I would no longer be able to be 'me'. Well, I am not far off being 'me' & I am able to do mostly all of what I want. I still need to sort out some physiotherapy to strengthen my muscles which have been deconditioned not only by the treatment, but a few years of various physical problems. Am I glad I had nigra protocol rather than a colostomy (even though some side effects persist)? Again, yes. I wanted to ensure as best as posiible that they got each & every one of those cancer cells. I was stage 3A, possibly a stage 3b at the outset, and more of my small bowel needed to be irradiated than my oncologist was comfortable with (thinking about late effects). But so far so good.

Hope this helps

Liz

 

Thanks Tracey and Pializ...

for your opinions and for sharing some of your experience.

Pializ said something that hit home for me. I'm scared that I won't be "me" if I have to go through with this. I had a fairly serious health problem a couple years ago and I started to get bad panic attacks and my behaviour changed. I slowly went back to being myself but it took a long time. I'm worried that something like this could change me in a way that I won't come back from.

I do appreciate all these responses though They're very interesting.

pializ

Anabel_Lee said:

Thanks Tracey and Pializ...

for your opinions and for sharing some of your experience.

Pializ said something that hit home for me. I'm scared that I won't be "me" if I have to go through with this. I had a fairly serious health problem a couple years ago and I started to get bad panic attacks and my behaviour changed. I slowly went back to being myself but it took a long time. I'm worried that something like this could change me in a way that I won't come back from.

I do appreciate all these responses though They're very interesting.

Anabel Lee

Hi again,

You mention having panic attacks a while back.Well, I think it is expected that anyone faced with cancer is bound to feel anxious. All the not knowing and waiting etc etc.

 Once I got my head into the space of accepting the treatment, and most certainly after the first day of treatment,  I threw myself into it like it was a project.  I had done my research into what helped on a practical level, and maybe what wouldn't, & went for it. That included diet, how to shower with a picc line in & so on.

One of the most powerful things to help me cope with the anxiety of it all though, was mindfulness. Google it! There's a lot of info out there, & Jon Kabat-Zin is the mindfulness guru. It helps us to stay 'in the moment', to accept that our worries and thoughts are just that. They are not facts. You do not have to spend hours and hours meditating. Sometimes, it's just looking at a flower, and noticing it in detail, or the bark of a tree. Just concentrating on our breathing can bring us back into the moment. We can't stop our minds from thinking, coz that's what they do, but it's not to attach judgement to the thought. It really helped me through treatment & beyond.

Liz

Anabel_Lee

pializ said:

Anabel Lee

Hi again,

You mention having panic attacks a while back.Well, I think it is expected that anyone faced with cancer is bound to feel anxious. All the not knowing and waiting etc etc.

 Once I got my head into the space of accepting the treatment, and most certainly after the first day of treatment,  I threw myself into it like it was a project.  I had done my research into what helped on a practical level, and maybe what wouldn't, & went for it. That included diet, how to shower with a picc line in & so on.

One of the most powerful things to help me cope with the anxiety of it all though, was mindfulness. Google it! There's a lot of info out there, & Jon Kabat-Zin is the mindfulness guru. It helps us to stay 'in the moment', to accept that our worries and thoughts are just that. They are not facts. You do not have to spend hours and hours meditating. Sometimes, it's just looking at a flower, and noticing it in detail, or the bark of a tree. Just concentrating on our breathing can bring us back into the moment. We can't stop our minds from thinking, coz that's what they do, but it's not to attach judgement to the thought. It really helped me through treatment & beyond.

Liz

Pializ

Thanks for the info. I'll google the person you mentioned

sandysp

Anabel_Lee said:

Pializ

Thanks for the info. I'll google the person you mentioned

I love your name first of all

My favorite poem!

Our friend who is a colo rectal surgeon said that if the surgery doesn't work and it often does not they still have to do the chemo and radiation and the stats are on the side of chemo radiation first.

The radiation hurt but I am glad I did it and glad I am feeling so much better. I was much sicker from the cancer than I am from any side affects measurable (mostly using a dilator every day to maintain elasticity).

Good luck.

Keep us posted.

Sincerely,

Sandy