Talked with Surgeon today

You are really going through the mill.  I've been thinking of you today, knowing that you had your appointment.  

I've never heard of anyone having their intestines removed; but then I'd never heard about allot of the stuff that cancer patients go through until I got it myslef.

I hope your genetic test prove that all is well.

...the entire colon removed? They do that with patient who have Crohn disease or irritable bowel disease.

Sounds like it's done pretty commonly and routinely in these cases and the logic is in your case that if you had multiple tumors and are genetically deposed, that would take care of it. 

If I may ask, how many tumors did you have in the past?

Laz

Is it not nice to know that a Doctor put us through Chemo and never geneticly tested to see if chemo would work?  In any other business this would be deemed incompetent, but in medicine, as long as they got their billables....

Folfox, Folfiri, and Avastin proved ineffective for me. 

It is time to look at alternatives:  Juicing  -  TCM   -  Ketogenic Diet  -   Buidling one's immune system  - Exercise

I am also looking to see if I qualify for a targeted Chemo.  Full Body Chemo makes little to no sense for me anymore.

Tell us what you find!

Best Always, mike

LivinginNH said:

 
Yikes is right!  Good

 

Yikes is right!  Good grief, I don't even know what to say to that one.  I'm so sorry that you've had to go through so much lately, and now this.    

Warm hugs....

Cyn

im so sorry about all of this i just told my husband we all have the same cancer but yet we all live in our own little world of troubles.no words can help just know i am thinking about you (((HUGS)))...Godbless...johnnybegood

Dear Winter Marie, it sounds to me as if you need more details.

If the genetic testing comes back that you are predisposed to tumors, and the surgeon wants "total removal " you need to know exactly what that means...is it both the large and small intestines...if so, by what means will you get nutrition since the bowel passes nutrients and hydration to the rest of the body.

I can only think of one person who had that done...SteveD.

Did he mention having a colostomy or an ileostomy?  Certainly one of those things would have to be put in place.

I hate that you are left worrying and waiting on tests after this news.  Praying that the genetic test comes back clean.

As always...detailed info is the key to being able to make the best decision.  Knowing the pros and cons is a must.  Then you may want to try to get a second opinion before doing more.

I know all this waiting is made more difficult because of the pain you are experiencing.  If you find yourself in an emergency situation before you can fully explore all this...if it were me I think I would opt for take only what you must...and deal with the genetic issues later. 

Hugs and love,

Marie who loves kitties

John23 said:

 

Listen…. I had a major colon resection in 2006 that left about a foot of colon inside, supposedly for possible reconnection at a later date. They gave me an Ileostomy….. the small intestine dumps into a pouch. What remains of a colon is useless.

 

Due to poor surgical procedures in 2006, in 2011 I suffered from adhesions that caused a total obstruction of the small intestine. The surgeon resected more than ½ of my small intestines, leaving me with another Ileostomy and only ½ of my small intestines.

 

And due to that very, very poorly performed surgery, I had complications and another total obstruction in Nov. 2012 that took a bit more of my small intestine, and another new Ileostomy.

 

Since 2011, I have suffered severe dehydration due to not having enough intestine to absorb enough water. I have to take hydration via a PICC line each and every day. Getting proper nutrition is difficult. B-12, for instance, is absorbed in a small section of the small intestine… missing that, B-12 has to be injected. Magnesium is not absorbed in the intestine that remains, so it has to be added daily to the IV hydration.

 

Presently, my health is suffering from the daily IV hydration. The hydratioin via PICC goes directly into the heart, and the heart eventually takes a beating. Hydration is being rejected and the water going into my lungs instead.

 

Do you really want me to tell you more?

 

Please do not accept the removal of any intestines as some sort of “preventive measure”. If they have to resect a small section due to a tumor or adhesion, then do it. But to remove what isn’t a problem, is foolish.

 

Get another opinion from another colorectal surgeon, please! Forget the Oncologist.

 

Your intestines are there for your survival, take them out, and you’ll have little chance of surviving. Your entire immune system is built by your digestive tract; all nutrients, vitamins, minerals are absorbed by your intestines.

 

People that are taking TPN (getting fed by IV) have a prognosis the same as any stage four cancer victim. Don’t add a problem to a problem, willya’?

 

You don’t want to go where I’m at…… Trust me.

 

Get another opinion!!!!

 

Be well,

 

John

Good advice John - sorry you are having such problems.  I guess we've seen more than once that surviving cancer doesn't mean an easy life.  My father is also a survivor (lymphoma stage 4) and is down to 120 lbs because he can't keep in anything that he eats.   They can't figure it out, but assure him it's not from the chemo...yeah.   Was thinking of you John - when we met with the onc the other day I asked her for her thoughts one TCM - as I'm sure you won't be surprised she said she is not a fan.  One reason being it's not regulated and you don't really know what you are getting - that is the main issue i've had with it, but she also said it's expensive.  I started laughing and said - no, chemo is expensive.  Seriously?!

WM - Im sorry you are dealing with this.  I am surprised that haven't tested your tumor from the beginning.  I think a 2nd (or 3rd) opinion is in order.  I hope that you can find a resolution that works for you.

Lovekitties said:

You need more details

Dear Winter Marie, it sounds to me as if you need more details.

If the genetic testing comes back that you are predisposed to tumors, and the surgeon wants "total removal " you need to know exactly what that means...is it both the large and small intestines...if so, by what means will you get nutrition since the bowel passes nutrients and hydration to the rest of the body.

I can only think of one person who had that done...SteveD.

Did he mention having a colostomy or an ileostomy?  Certainly one of those things would have to be put in place.

I hate that you are left worrying and waiting on tests after this news.  Praying that the genetic test comes back clean.

As always...detailed info is the key to being able to make the best decision.  Knowing the pros and cons is a must.  Then you may want to try to get a second opinion before doing more.

I know all this waiting is made more difficult because of the pain you are experiencing.  If you find yourself in an emergency situation before you can fully explore all this...if it were me I think I would opt for take only what you must...and deal with the genetic issues later. 

Hugs and love,

Marie who loves kitties

 

You need to get the genetic testing done to see what may be going on,  these take time,  use the time between to get second third opinions.   Just curious, are you on celebrex??  

John23 said:

 

Listen…. I had a major colon resection in 2006 that left about a foot of colon inside, supposedly for possible reconnection at a later date. They gave me an Ileostomy….. the small intestine dumps into a pouch. What remains of a colon is useless.

 

Due to poor surgical procedures in 2006, in 2011 I suffered from adhesions that caused a total obstruction of the small intestine. The surgeon resected more than ½ of my small intestines, leaving me with another Ileostomy and only ½ of my small intestines.

 

And due to that very, very poorly performed surgery, I had complications and another total obstruction in Nov. 2012 that took a bit more of my small intestine, and another new Ileostomy.

 

Since 2011, I have suffered severe dehydration due to not having enough intestine to absorb enough water. I have to take hydration via a PICC line each and every day. Getting proper nutrition is difficult. B-12, for instance, is absorbed in a small section of the small intestine… missing that, B-12 has to be injected. Magnesium is not absorbed in the intestine that remains, so it has to be added daily to the IV hydration.

 

Presently, my health is suffering from the daily IV hydration. The hydratioin via PICC goes directly into the heart, and the heart eventually takes a beating. Hydration is being rejected and the water going into my lungs instead.

 

Do you really want me to tell you more?

 

Please do not accept the removal of any intestines as some sort of “preventive measure”. If they have to resect a small section due to a tumor or adhesion, then do it. But to remove what isn’t a problem, is foolish.

 

Get another opinion from another colorectal surgeon, please! Forget the Oncologist.

 

Your intestines are there for your survival, take them out, and you’ll have little chance of surviving. Your entire immune system is built by your digestive tract; all nutrients, vitamins, minerals are absorbed by your intestines.

 

People that are taking TPN (getting fed by IV) have a prognosis the same as any stage four cancer victim. Don’t add a problem to a problem, willya’?

 

You don’t want to go where I’m at…… Trust me.

 

Get another opinion!!!!

 

Be well,

 

John

I'm really sorry that you're having such a hard time.

I need to quit complaining about my achy joints. 

I hate to hear that the dr is rec that type of surgery. In 2005, a rn that i know who works at methodist hospital in indianapolis, indiana, told me that they ( working with indiana u in indianapolis) had just completed the " first in the world"  intestine transplant. And the pt did great & is alive! A pt of mine 5 years went there for a transplant ( he had crohn's & was at deaths door) & today he is healthy. There are prob other med centers who do this & hopefully you will never need the surg. I just wanted to pass on some info for you to check into when/if the time comes. Take care!

hugs

judy

Unusual story, I know a gal who's complete colon was full of colitis so bad the whole colon just rotted.  Whole colon was removed and her rectum.  Doctors built her a new colon complete with ability to eliminate without a bag.  

She was living in Utah @the time and I don't know all the details. It had to be at least 7 years ago.  She is fine to this date I see her often.

Dyan & George