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Stage 4/Rectal Surgery now with colostomy

Ckat
Posts: 17
Joined: Nov 2012

Wondering if some of you can give some good thoughts and their experience on this - my dad was diagnosed Nov 2012 with stage 4 rectal cancer with mets to his liver.  at the time they said only chemo would be his defense.  he had 5 rounds of forflori/avastin and mid feb had a scan that showed the livers shrinking quite a lot.  they now said he could go ahead with removing the rectal tumor and thereafter do liver surgery.  that was great news to hear.  he had his rectal surger yesterday where they removed just over a foot of his colon, resulting in a permanent colostomy.  this will be an adjustment ofcourse but better than the orignial alternative and happy to have further treatment for him.  wondering from your experiences how is it adjusting to the colostomy? and do any of you have similar stories of being stage 4 and after surgeries being a long time survivors/NED? any uplifiting info would be appreciated as i am going to visit him in the hopsital soon and would love to share the stories with him to give him a lift.  thanks.

danker
Posts: 723
Joined: Apr 2012

A member of our cancer group had a permanent colostomy 7 years ago.  Said it is easy to live with. I believe there is a colostomy group you can look into on the web. Good Luck

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I'm stage 4 (mets to liver, LN, lung and peritoneal cavity) and have been told that I am not a candidate for surgery, even after pretty good shrinkage on FOLFOX + avastin.  I also have a colostomy, but it a transverse loop and not a permanent colsotomy.  Where did they put the colostomy (right side or left side)?  That will affect how firm the output will be, which can affect how easy it is to take care of.  Have had mine for 9 months, and its just my new normal now.  Best of luck.

Tedd

John23
Posts: 1832
Joined: Jan 2007

 

There’s a website/forum dedicated to all ostomates here:

https://www.ostomy.org/forum/viewforum.php?f=2&sid=b602ca9c47c08d25cc7d90c61b4f9776

 

You’ll be able to get a lot of answers there. Keep in mind that it is a forum just like this, and suggestions, advice, and opinions will be coming from “people”……. You’ll have to sort out what sounds right, and what doesn’t.

 

For info regarding Ostomy care, etc, you can click on my name, go to my “profile page” and click on the “blog” link. The info there will cover an Ileostomy specifically, but much of it will apply to all types of ostomies.

 

I’ve had an Ileostomy since 2006, and there are some “tricks” that nurses and physicians do not tell you about.

 

I’m surprised that they gave him a permanent colostomy if only a foot of colon was taken out, unless they plan on removing the rectum, etc. later on? But having an Ostomy isn’t really any big deal, unless he was planning on joining up with the Chippendales… But he’s probably a bit too old for naked pole dancing anyway!

 

He’ll do fine, it just takes time to re-coup!

 

Good luck; good health,

 

John

 

steved
Posts: 836
Joined: Apr 2004

Have had a stoma twice in my life- initially temporary and revered and now a planet onefollowing recurrence of the cancer. It really issomething one can adapt to well and lead a full life with as long as you are accepting of what it is and means ie not too hung up about poo issues! Onyou are used tochanging the bags it becomes routine and needn't stop your dad doing anything. There are a lot supportegourd ups for stoma users.

Never had liver mets so will allow others to answer thatbuilt though know several here for long periods including ned despite a history of liver mets. 

Hope all goes well,

Steve

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I've had a colonostomy since 2008,and it just becomes part of your routine after awhile.In 2010 it came back,and spread to my liver,and I had a liver resection july 2012,after doing chemo,and now I'm ok agian.The ostomy site will have a lot of information.One thing he can do is put a little mint mouth wash in the bag to help with the smell,only about a teaspoon full.WHEN HE PUTS THE BAG ON HE NEEDS to make sure it is on securely.Good luck.

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I've had a colonostomy since 2008,and it just becomes part of your routine after awhile.In 2010 it came back,and spread to my liver,and I had a liver resection july 2012,after doing chemo,and now I'm ok agian.The ostomy site will have a lot of information.One thing he can do is put a little mint mouth wash in the bag to help with the smell,only about a teaspoon full.WHEN HE PUTS THE BAG ON HE NEEDS to make sure it is on securely.Good luck.

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