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Looking for the truth about life after colectomy

deanna14
Posts: 743
Joined: Oct 2008

I am a 6 year survivor of uterine papillary serous cancer. i am positive for Lynch Sydrome. I have radiation damage to my sigmoid causing discomfort among other problems. Surgeon has advised me to consider coloctemy. I have been doing at least yearly colonoscopies for the last 6 years...

Any words of wisdom, pros, cons.....

lp1964's picture
lp1964
Posts: 1238
Joined: Jun 2013

I don't know how many people you are going to find here tht had total colectomy. You may have better luck at: UOAA.org forum where there are dozenz of people like that.

If you liked to know about colostomy I'll be happy to help you.

Laz

rae_rae's picture
rae_rae
Posts: 300
Joined: Oct 2010

I had my sigmoid colon resected this past summer and I've had no issues. 

hippiechicks
Posts: 509
Joined: Sep 2012

I have had a total colectomy.  It was not an option for me but a life saving procedure due to my colon cancer and the damage it had done.  I don't think your surgeon would advise you to consider this unless he/she feels it would make you more comfortable.

I will say that there are pro's and con's .. for me .. the pro's were life .. so that outweighs anything else .. I suppose I would need to know more of the reasoning why the suggestion was made and to know how severe things have become.  I am assuming pretty bad seeings how this was even suggested to you.

Some things to remember .. dehydration will always be a factor in day to day living.  It can be a pretty big issue causing havic on your body.  I have suffered confusion, body aches, muscle spasms, headaches, dizziness, parched mouth, and difficulty going to functions that do not allow me to bring my own drink with me.  I have to have special permission from places to do so as I need to drink sports drinks with electrolytes constantly for hydration. 

With all of this, I have still had several times where I needed to go to the hospital/ER/clinic for hydration.  That also means dehydrating drinks as well as anything carbonated needs to be limited. There will likely be some diet changes as well as concerns for blockages.  Not having a colon also means it may be easier and more problematic for you if you develope a blockage in your small intestine. 

Likely you will have a permanent ostomy (ileosotomy) which means you will be wearing an appliance continually.  This has it's own set of challenges from skin problems, leakage, clothing, swimming, showering/bathing, over all worrying to protect it from injury/damage, limitations of some strenous activity and safty belts, not to mention the new medical expense for products needed daily. All of these things are just a new part of life. 

Would I choose this?  That would depend on a number of factors.  If your health will benefit from this surgery .. then it may be worth the con's.  Also, if your QOL is severly disfunctional .. then it may be worth the surgey.  As this is no picnic, it is fairly pain free.  Scar tissue from the surgery itself is mostly causing my pain. I work on this daily.

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