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Talked with Surgeon today

herdizziness's picture
herdizziness
Posts: 3328
Joined: Apr 2010

Didn't like too much what he had to say, it seems I'm predisposed to the tumors in the intestine and with them only be able to go up a few inches they have no idea what else will be there.  He suggested the genetic test (which my onc is already having done) and if come out genetically deposed should have all the intestines removed.  YIKES!!!  Anyone else have this stuff to think about What to do?

Winter Marie

Trubrit's picture
Trubrit
Posts: 980
Joined: Jan 2013

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.

Chelsea71
Posts: 1154
Joined: Sep 2012

I really like your doctor(s).  They seem to really want to do everything to keep you alive.  I like that attitude.  The idea of having your intestines removed must be frightening.  It beats, "Sorry, can't help.  Chemo for life is your only option".  Sorry you're dealing with all this stuff on top of what's going on with your SIL.  Hang in there.

 

Chelsea

lp1964's picture
lp1964
Posts: 745
Joined: Jun 2013

...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

 

herdizziness's picture
herdizziness
Posts: 3328
Joined: Apr 2010

He specifically said intestines. Way to many times as far as I'm concerned.

John23
Posts: 1832
Joined: Jan 2007

 

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

jen2012
Posts: 1132
Joined: Aug 2012

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.

PhillieG's picture
PhillieG
Posts: 4658
Joined: May 2005

It seems like very drastic measures that can have some very harsh effects. Get another opinion. 

annalexandria's picture
annalexandria
Posts: 2028
Joined: Oct 2011

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

I need to quit complaining about my achy joints. Embarassed

thxmiker's picture
thxmiker
Posts: 1170
Joined: Oct 2010

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's picture
LivinginNH
Posts: 1217
Joined: Apr 2010

 

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

johnnybegood's picture
johnnybegood
Posts: 1121
Joined: Oct 2008

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

JTL52
Posts: 16
Joined: Jul 2007

Hi Winter Marie,

I have Lynch Syndrome defect also known as Herititary Non Polyposis Colon Cancer(HNPPC).

My screening is annual colonoscopy, colon complete removal is suggested if patient is not willing to do the annual screening.

Good luck

Janet

Lovekitties's picture
Lovekitties
Posts: 2825
Joined: Jan 2010

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

 

smokeyjoe
Posts: 1428
Joined: Feb 2011

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??  

annalexandria's picture
annalexandria
Posts: 2028
Joined: Oct 2011

sounds like more info/second opinion is needed.  If it turns out that you have FAP (or Lynch-but first FAP would have to be ruled out), then in most people they would do a complete colectomy, so you would still have the small intestine.  But FAP is almost 100% first manifested in very young people, so maybe this is one of the FAP subsets (like AFAP, in which colon cancer usually hits around age 50).  At any rate, I really would want to talk to someone who knows a lot about this kind of condition, if in fact you have it.  And I would want a CRC surgeon on my case who is very, very experienced, to help me make this call.

I'm sorry, Winter Marie.  I wish you didn't have to go through even more worry and stress.  Da** cancer.

Sending some hugs your way~AA

Chelsea71
Posts: 1154
Joined: Sep 2012

I do know that it's not possible to have your entire small intestine removed.  The body cannot survive without a certain amount of small.  (absorption etc)  The large intestine (colon) can be removed in its entirety.  It leavesthe person with an ileostomy.  When a portion of the small intestine is removed sometimes the individual winds up with a colostomy.  They definetely cannot remove all the small.  Of this, I am certain.

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

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

WinneyPooh's picture
WinneyPooh
Posts: 318
Joined: Jul 2009

Just to let you know i am totally sorry you are experienceing this kind of pain and this kind of diagnosis, I have the same thing going on with me, I went into the hospital after a failed colonostopy on the 8th and had to stay on iv, lipids diet for 10 days until they were able to advance an endoscopy a short distance up the signoid colon, they found significant blockage and advancement of cancer.  I was under the impression that i did not have any more cancer in the colon as to the other tumors were stable else where in the body. I had been experiencing unbearable pain for several months and finally I now have answers, they placed a stint in the signoid colon to open me up this was possible because the colon was straigt and not bend due to previous removal of part of the colon, when they opened the area up i got some relief and my oncologist increased the frequency and changed the chemo to target those tumors,  I am one a strict diet of easy to digest food, nothing really solid, semi solids like yogurt, apple sause, soups, cooked vegetable, liquid meal replacement shakes high in protien , GNC brand has 28 grams of protien. baby type food, oatmeal, fruit that is small peices or cooked to mush. It is working for now.  But then again it has only been a few weeks, I also have to take stool softener and merilax daily.  They will be monitoring my progress and hopefully the tumors will shrink and we will not have to resort to removing the colon and an illi ostomy.  

I wish you the best of luck and I hope you can take something from my post.  

Please do not wait to go to the hospital if the pain is to much to bear, a rupture can happen easily and this can kill you. 

Take care

Penny

Dyanclark's picture
Dyanclark
Posts: 236
Joined: Apr 2012

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 

RickMurtagh's picture
RickMurtagh
Posts: 524
Joined: Feb 2010

Winter Marie,

many here are semi colons, but i am sans colon.  i had two large tumors in different parts of my colon and many polyps spread throughout the rest of my colon.  my surgeon (keep in mind surgeons almost always suggest surgery - it is what they do) suggested I have the whole colon removed or I may be chasing cancer my whole life.  that was my situation and i elected to have the whole thing removed.  i have an ileo now and other than the occasional blowout, i am very happy.  i have four new grandkids since surgery and have been to several weddings all due to the modern miracle of surgery.  you can live quite well without a colon.  the human body is amazing.

don't be scared, just learn to live with your decision.  it is after all, your decision and like it or not, you will have to live with it.  there is no reason your life can not be a good one, even without a colon - just sayin.

peace

rick

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