Not sure what to do

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newcaney
New Member


Date Joined Dec 2010
Total Posts : 17
   Posted 4/4/2011 1:57 PM (GMT -6)   
Not sure what I am going to do, Had rectal cancer removed Aug
13th of last year. So have had a bag since and also had 10 rounds
of chemo that kicked my butt. Have just found out I am missing
a Gen MSH6 ( a repair gen) so they tell me I still have 30%
chance of colon cancer returning. So do I get hooked back up
and have colon screened each year a pray nothing happen
or do I just have them remove it and live with the bag. Looking
for advice

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/4/2011 4:13 PM (GMT -6)   
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?
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

newcaney
New Member


Date Joined Dec 2010
Total Posts : 17
   Posted 4/4/2011 5:38 PM (GMT -6)   
Think I have ajusted pretty good with ostomy,last round of chemo was Jan 26th I have gained weight back. I started playing golf again this past week end only held up to 12 holes then got tired also road the motorcycle a little bit. Over all I think I am doing good just afraid if I dont have it removed in few years it returns dont think I could do this again.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/4/2011 5:47 PM (GMT -6)   
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.

newcaney
New Member


Date Joined Dec 2010
Total Posts : 17
   Posted 4/4/2011 6:13 PM (GMT -6)   
blueglass,
I would say for me the chemo is the worse I have not been able to do much of any thing while on chemo but be sick and sleep. I was in Iraq on my second tour when out of the blue when I would go to bathroom I would bleed so I went to see the medics and they gave me exlacks told me I just needed to be cleaned out. Then after about month of me going back they sent me to Germany thats when they found it. When doctor told me I could not believe it this happens to other people not me
I am only 44. I am very glad a friend put me on this site its good to be able to talk and read post with people that are going through the same kinda of things. Thanks for your reply

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/4/2011 7:05 PM (GMT -6)   
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.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/4/2011 7:54 PM (GMT -6)   
personally, i would get the colon out and not have to worry!  its a sure fire way to never get colon cancer, if you don't have a colon! 
if you are doing good with a bag, and it sounds like you are, then why take the chance the cancer will come back?
and the constant worry each year, that it may have come back, and did you catch it in time, and will the chemo work this time, and all the other what ifs
 
 

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/5/2011 5:05 AM (GMT -6)   
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)))
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 4/5/2011 5:17 PM (GMT -6)   
If it was my I would have the colon removed and have the cancer coming back worry taken off my shoulders. I had my colon removed 7 years after having my ileostomy for Crohns Disease because my surgeon said if left it could turn cancerous and they had a problem doing colonoscopies as so badly diseased. So for me very easy decision, I just was glad to get rid of it, one thing less ot worry about.

Only you can make the decision on how you feel about things and how you're coping now with the ileostomy. Wishing you the best for whatever you decide.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

ohcountrybear
Regular Member


Date Joined Mar 2009
Total Posts : 192
   Posted 4/5/2011 5:33 PM (GMT -6)   
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
New Member


Date Joined Dec 2010
Total Posts : 17
   Posted 4/5/2011 9:50 PM (GMT -6)   
Thanks to everyone, this has help me alot. ohcountrybear that is were they found mine it was stage 3. You guys and gals have been so much help being able just to talk to other people that understand what your going through.

ohcountrybear
Regular Member


Date Joined Mar 2009
Total Posts : 192
   Posted 4/6/2011 4:50 PM (GMT -6)   
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.

claygirl4#90
New Member


Date Joined Feb 2011
Total Posts : 11
   Posted 4/9/2011 7:32 PM (GMT -6)   
Hi Newcaney, I was diagnosed with colorectal cancer 7 years ago right after my 40th birthday. They found the cancer just past the end of my rectum and we decided to do radiation, chemo, surgery and then more chemo in an attempt to save my rectum. It all went well until three years later when it reared its ugly head right at the connection site. I know I wasn't ready the first time around; however when it came back, I said take out the rectum and give me a pouch. It has now been four years with the ostomy and I am grateful for each day. Peace of mind is what makes it all worth while. Good luck and welcome to such a wonderful group here in this forum!

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 4/10/2011 7:29 AM (GMT -6)   
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.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 4/10/2011 2:11 PM (GMT -6)   
I mentioned your post to my husband. Since this occurred while you were in the active military if you haven't done so already you should follow through with the VA concerning this.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

fish1
Regular Member


Date Joined Jan 2010
Total Posts : 106
   Posted 4/11/2011 7:55 PM (GMT -6)   

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


newcaney
New Member


Date Joined Dec 2010
Total Posts : 17
   Posted 4/20/2011 1:55 PM (GMT -6)   
Hey Paul, thank you for this site it has been a big help to me. I have colonoscopy Thursday then talk to the doc about surgery. UC Wife I will be talking with the VA soon thank you. I have pretty much made my mind up to have colon removed the bag has not been a big deal lately have gotten used to it I do just about anything I want but I am prob going sale the dirt bike.
 
   Dale cool
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