Not sure what to do

That is really a personal decision. How have you adjusted to life with an ostomy? How long ago was your last round of chemo?

I had my colon removed a few years ago and as far as quality of life goes it's no biggie. I have Crohn's and really didn't care if I ever went the 'old fashioned' way again and my cancer screenings were more frequent because my diagnosis was more than 20 years ago.

How are you feeling now?

Well, which is worse, the chemo or the bag? You have experience with both. I guess it's the (possible) chemo and the screenings and the worry, versus the bag, being done, and what that entails.

Were you sick before you were diagnosed or was it a surprise? I think it's very different emotionally for those of us who were sick for years and then had the permanent surgery versus those who had it in a new crisis -- for me it's the hope of a better quality of life, and so much of the loss happened before the surgery. However, if this all just started 8 months ago for you, it's a lot to take in in a short period of time. It might make sense to give yourself some time ....

So sorry about your new diagnosis, must be quite a blow.... welcome to this forum; it's been really helpful for me.

That's incredible that they gave you laxatives for rectal bleeding. What kind of training do they have? When I got diagnosed (went back and forth between ulcerative colitis and crohn's colitis the first few years) I was scared it was colon cancer because it was the only thing I'd heard of that caused rectal bleeding, and a guy I worked with died of it at 38, left two little kids, it was just awful..... so, I'd been to his funeral in the past year.

Don't mean to be scary, but I'm sure you know that colon cancer is no joke. It took me a long time to get it that what I have is also serious .... kept thinking I could just tweak my diet or how I responded to stress and it would be OK..... but it got worse and worse. My surgeon gave me a picture of my colon that she took out, and it's just amazing how horrible it looked.

It's great that you're reaching out to talk to others here; do you have others you can talk to in person too? You've really been through quite a trauma. If you were in the military, I'm sure you were in good shape and felt healthy, and then so many things changed so quickly.

I think another thing to think about would be what would it be like to have the colonoscopy every year, bad enough in itself, with the worry that if the results are bad you have to start chemo again, and probably lose your colon anyways.... is that better or worse than another surgery and a bag for life? No one else can answer that for you, and you could even wait a few years to decide.

Well, you've proved you can live a happy life with an Ostomy! We are the same age and I've had mine for more than 10 years...surgery is not a walk in the park, but living a happy healthy cancer free life is!!! I don't ride motorcycles but I run, boat, kayak and on occasion ride my daughter's horse...life doesn't stop with an ostomy:)

Thank your friend for telling you about this site and more importantly....THANK YOU for your service. (((HUGS)))

I too have had colon cancer. I have had my pouch for a little over two years, it is far better than chemo. They first found it in my rectum, they said they had it all, my second pet scan came back positive throughout half my colon and lymph nodes which put me at stage 4 and back into chemo. I have 2 inches of my colon and I still worry to some point. I have been clean since November but every pet scan I worry.

newcaney, it gets better, I love my stoma, it has given me my life back, I do worry at times but she allows me peace of mind when it comes to my colon.

newcaney...first of all thank you so much for your service to our country and to keep us all safe.

My husband is a VietNam vet...he swears Agent Orange might have caused his UC or a contributing factor as nobody in his family has this or any kind of bowel disease.

Aside from that...........we met with his local GI Dr here last June.  He was at the point he had tried so many different things, suffered for 5 years.  Remicade failed and the pain management program he was on and supervised closely every month needed to be increased!  We were going to the Mayo Clinic twice a year and his Dr up there kept talking the surgery route but he wasn't ready and thought he found a way to cope and deal with this even though his quality of life (and mine) was horrible.

Back to the June appt..........his local Dr told him straight out that he was now at the point that she thought he should have colonoscopies twice a year to try to keep ahead of things.  She explained in detail even though the polyps they find and remove are non-cancerous it would be very easy when collecting those polyps that they miss a cancerous one in between.  This was the kicker and defining "AH HA" moment for him........she said "I honestly feel it is not a question of IF but WHEN this turns cancerous" thus the reason for colonoscopies twice a year.

"If that were to happen then not only are you in a spontaneous  emergency surgery situation but chemo and radiation to deal with too on top of it all".  Of course she went on to say that is her professional opinion due to her treatment and monitoring of his case over the past 8 years in conjunction with the Mayo findings.  Of course there is no way of knowing when something like this would/could happen.  But since he was basically strong and not in a terrible flare but flaring nonetheless he made up his mind right there and then that it was time.

Once he made that decision it wasn't until mid Dec he had the surgery due to the logistics with Mayo, a prostate issue and an Oct. vacation we wanted to take but it was a tremendous relief overall.  It's funny how that decision just seemed to make things better in a sense.

You are younger than my husband and I am sure dealing with other thoughts too.  But like so many have said once you get over the surgery healing, the learning curve with the ostomy and finding what works the best for you personally it does give you a different lease on life.

Good luck with your decision.  It certainly isn't something any one of us sets out and wants....everyone hopes to try to get a remission...but when you suffer and miss out on so much it is time you will never get back.  I like looking forward and seeing my husband continually improve and being able to get back in the game and do more and more.  Still recuperating and not quite there yet stamina-wise but overall our lives are so much happier.  I thank God he survived a tough surgery and we look forward to many more years together doing things we love to do.

This is an awesome forum with great people and great advice.

Hey NC glad to see getting some advice on here. I hope you will take the time you need to make a decision. Time has a way of bringing things into better focus. If you are back in east county give me a call and maybe we can try 9 holes!

Paul