Seeking Advice on Colostomy After Chemo and Radiation

I am just starting the chemo and radiation. 5 weeks total. 8 - 10 weeks after I am to have a colostomy, which I am not totally opposed to but then again I am wanting to shy away from. I have read on many websites - reliable ones, not just a blog post - that there are many limitations when you have a colostomy. I am of the mindset, why even bother with the surgery if the chemo and radiation have destroyed the cancer. (I am in stage 3 rectal cancer). For me, I am concerned what others think, see, SMELL (lol), of me once I have this surgery. Will this improve my quality of life or will it just buy some more time here on earth? I really need some good advice from those that have had similar concerns. Thank you in advance.

eHello Neil. We all have the same concerns to some degree and wouldn't anyone shy away from the prospect of having a colostomy?

I don't feel I can give 'advice' on the subject but I can make comments on my own situation. I have had  a colostomy for a few years and before that I put up with many years of pain and incontinence. Upon reflection, I am now convinced that I should have had the operation many years earlier, when it was first offered. My quality of life has improved considerably and I now maintain a relatively normal life, doing more or less eaxctly what I want to do. The only thing that tends to hold me back is the ageing process and consequent  diminishing of physical capacity but they have not yet found a solution to that particular problem.  What I found most useful regarding the colostomy, was that after a while I tried Irrigation and that negated the necessity to wear a bag during the day because there was no output. This alters the whole experience of living with and managing the stoma and makes it much easier.

I hope this helps in your deliberations.

Best wishes

Bill

Hi! Best wishes on your chemo and radiation—may you sleep through a lot of it!

As for your concern about what others will think about your colostomy, I was fairly open about mine from the git-go, and everyone is super-nice to cancer people so they immediately put their best and most empathetic foot forward. nbsp

What do people see? nbsp; I haven't gone swimming with mine, so nobody sees it. I'm not sure how guys handle the wardrobe part...girls wear dresses and stretchy-waist skirts and leggings with long tops. . . some guy input on this would be interesting!

Smell? nbsp; POWER FAN. My husband put in a really top-quality ceiling fan in my bathroom (didn't used to be just mine, but it is now!). The fan is so strong that I don't have to vacuum the house anymore! nbsp; Really, though, I don't know the make but hubby bought it from a big chain hardware store and looked for cubic feet of air moved per second or something. nbsp; And if I have to empty the bag while away from home I go somewhere with large restrooms.

It's going to be OK, Neil! nbsp; Your life HAS quality, and you're also part of ours, and every minute more of YOU is a GOOD thing!

I'm a cancer survivor for 15 years now. You can lead a fairly normal and productive life post-cancer and ostomy. I worked for many years at a very physical job, and most people never knew I had an ostomy. I would suggest that you ask your surgeon early if you qualify for irrigation, which will take a lot of stress off working. If you have any questions I can help you with, just ask. Good luck!

  Neilg32,

 Like so many others on this site, I went through 6 weeks of Chemo & Radiation daily for stage 3 colon/rectal cancer. It wasn't much fun, in my situation it did shrink the tumor, but it wasn't the cure. The removal is what allows most of us to continue without the cancer. I too was reluctant to go through all of this at first and questioned the quality of the rest of my life. At one point I even felt that all I was doing was paying doctors to extend my life. When I went in for the set up for radiation the doctor really let me have it when I conveyed my thoughts not to go through the treatment. She spent a good 10 minutes chewing me out, calling me self-centered, thinking only of myself, small-minded, and making a bad choice for my family and friends. I did complete all of the treatments and had the surgery, total removal of the rectum & partial colon. After an 8-hour surgery, I woke up with the dreaded bag. At first, I wasn't sure if I could even go back to work with this new thing attached.

It's been just over a year since my take-down surgery and I am cancer-free. As far as being limited....the only thing I am careful with is lifting heavy objects. I am as active as ever, I run 2 businesses, have a family, rental properties to maintain, flip houses, along with my wife we both drag race at the local track. I still do almost everything I had done prior to all of this.

As far as the pouch, I just learned to adapt, one more thing to take care of, just like brushing your teeth. As far as what others think, most have no idea and you would never know unless I told you. It does take considerable effort to find the right products, but as far as any smell, it's rare and there are many odor products.

Best of luck

J

Words of Encouragement from Ostomy Advocates I Hollister

Hi Neil. I won't bore you with details nor will I pretend to know all the answers but I went through a lot of the stuff you're writing about. I did the chemo, the radiation, resection surgery, more chemo, a “temporary” loop colostomy, then the permanent end colostomy. Oh, I almost forgot about the malignant bladder tumor removal. So, seven years after all this started I'm very comfortable with my stoma and my life in general. For your medical situation you need to choose professionals you trust and have confidence in. For the quality of your life now and after all this you need to choose people who think, see and whatever else the best of you.

Keep in touch and ask all you can.

Respectfully,

Mike

Oh my goodness!

Am I wrong to read into this that this is WAY harder for guys than girls?

LetsRock, you and Neil express the same feeling of prolonging life as a possible choice, Mike (ImacG5) seems to be expressing collusion in your feelings. Please correct me if I'm wrong.

Call me sexist, that's OK, I am quite happy in my roles as "Mommy" and "Suzy Homemaker" and "Sally Shopper." I'd be a "Stepford Wife" too if I wasn't quite so belligerent and mechanically challenged...

Some of you guys seem to put "colostomy" into that whole "reason to live" category. REALLY? I mean, REALLY?? ; OK, it's a goofy and unpredictable and extremely expensive (yeah guys, try THAT problem for size!) new appendage.

So... join the club! It's not an "oh no I'd rather die" scenario, it's a "Poo Happens" world with all of us clamoring to support you and any difficulties that arise from your ostomy.

Mommies get the fun of babies, who are a poopy appendage that generally needs constant washing and changing and smelly factors that do NOT bode well for airline or long-distance car travel. Ziplock bags for impromptu poos are par for the course. Multiple and constant changes at night are a given.

So now it's us instead of our babies. Leaky poo, smelly changes, crazy hours, but NOW we have personal embarrassment to accompany it all, which we never felt when changing diapers for the kids.

Neil: "Buy some more time?"

It's like letsrock's old self... "paying doctors to extend my life."

Sorry guys, this is all probably 10 times more emotionally difficult for you than it is for mommies who deal with poo, and who are probably better at articulating their feelings regarding diapers. Or vomit, or periods. Or menopause or incontinence. Do guys even talk about all that on a social level as women do with other women, whom they may not even know well?

Sorry NDY. I don't know where to begin. I never questioned the difficulty factors caused by a stoma as being related to gender. My answer to your last question would be “NO”. We typically don't share stuff like you mention; not even with people who should know like doctors or spouses. So, that might mean it's more difficult for guys to talk about their ostomies but no more difficult to live with them. I know very little about women's feelings toward those things you mention. I do think, however, that if guys had to get pregnant and have babies, the last folks on this planet would've been Adam and Eve. (That's if we believe we came from them).

I guess I need to read Neil's and Letsrock's stuff again. Then I need to reread my stuff. Then, maybe, I'll understand what we're talking about.

Respectfully,

Mike

Not to sound insensitive, Neil, there are more limitations when you are pushing up daisies. Your question indeed prompted very helpful responses from our caring and reflective community. To me, you seem at a crossroad now where you must make a life-changing choice that forces you to consider and examine your own personal value system. I was in your shoes 13 years ago when my GI found pre-cancerous cells on my colon during a routine colonoscopy. He gave me some options but added a question: "Do you want to play Russian Roulette with your life?" After confirmation through a second opinion, I immediately opted for surgery and never looked back. That was one of the best decisions I ever made. Keep in mind, however, that I was 60 years old at the time and happily married. Body image was low on my priority scale, even though I entertained aspirations of being employed by Chippendale's. In the 13 years since my initial surgery, I have never regretted this decision and never, never felt "limited" only empowered thanks to the support of my wife and to the many good people here on this site who allowed me to feel one among many. BTW, I have never given off bad odors, but I really miss farting. Good luck!

   PB

Once you are healed from the initial surgery, there are only the limitations you put on yourself.

I have since relied upon credible websites such as the Cancer Centers of America, Mayo Clinic, and John Hopkins just to name a few and am more at ease with the ostomy. Information which I thought to be accurate was indeed the opposite. I appreciate all the support I am receiving from this site. I will admit that the first week into my treatment regime I was leaning toward, "let nature take its course".

Frankly, we have all been there at some point, wondering just how this could have happened to us. We have families, jobs, friends, businesses, ... a life! I don't have time for this! For me, it was the initial cancer diagnosis, and it all unwound from there over time. However, it really all comes down to one decision point - are you going to opt for treatment and work to beat whatever is coming, or are you going to stick your head in the sand and passively allow yourself to be taken off the gameboard of life.

Do not go gentle into that good night! Rage, rage against the dying of the light!

Once you make that decision to live, and not to die, nothing else is too hard to bear! Whenever you are tempted, or falter, just remember it all boils down to that one simple question, so harden your resolve and continue.

We all want you here, on this earth, with your family and loved ones. And when you think hard enough about it, and clearly enough, you will realize that's what you want as well.

Neil G, we're all yapping but where are you and how are you?