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Complete Colon Removal?

carrieh
Posts: 116
Joined: May 2012

I met with my surgeon today...lots of good information. We are considering a complete colon removal; attaching the small intestine to the rectum...I will go to the bathroom 3-4 times per day (he says) for the rest of my life if we do this..

Has anyone had this done? Would you mind terribly to share your story (what day to day life is like, complications etc)? It's a tough choice to make. My cancer is genetic and my chances of having another type of colon cancer are extremely high. Since I'm only 32 it's basically colonoscopys every 1-2 years/risk of repeat cancer/smaller resection..or complete colon removal and attaching the small instestine to the rectum...not having to worry about more surgeries or new cancer...it's enough worrying about this go round..

I'm leaning towards removing the entire colon because my tumor is so big, the colonoscope couldn't get around it to see most of my colon (could be more tumors), genetic risk,financial cost of colonoscopys each year...I never want to go through this again if I can help it. If I keep most of my colon I think I'll feel like I'm keeping a house that should be torn down. I would rather have to go to the bathroom a lot than get a whole new cancer in 5 years..but quality of life is important too. If anyone could/would share their story about total colon removal I would be so very thankful.

Also, at the same time (surgery week of June 25th); I am having my appendix, gall bladder, uterus, one remaining ovary removed, plus colon resection...yikes!! If anyone has experienced something like this I would really appreciate any advice. I'm scared that I won't be tough enough to have all of that done at once; that may seem silly but..I'm worried my body will go into some crazy shock or something...that's prob my fear talking and not even medically valid but still...

(Last thing..I promise..I'm a rambler) I'm 5'11 and only at 119 lbs..having real trouble keeping any weight on..Doctors say I can't afford to lose much more...any tips out there on how to fatten up quick (but not get crazy constipated)? Cuz I know they're gonna STARVE me in the hospital...(LOL).

Thank you,
Carrie and Family

John23
Posts: 1832
Joined: Jan 2007

It would be in your best interests to get a second (and possibly third)
opinion from a qualified and experienced colorectal surgeon.

Connecting the small intestine directly to the rectum is not the
usual way to do a major resection. The absence of the colon
means that the ileocecal valve will also be gone (it is part of
the colon). Without that valve, there is less regulation of the
output from the small intestine.

Those of us that have an ileostomy can tell you that there is no
regulation of the output. When your system is working, the food
product (and waste) is moving at it's usual pace through the
system, albeit uncontrolled..

With an ileostomy, the waste exits into the pouching system
continually, and as an ileostomate, you empty the pouch as
soon as it's 1/3 full.

If the small intestine is connected directly to the rectum, you
will have no control; you will have no ability to empty when
it is best for you to empty, as you would have with a pouching
system.

It is not unusual for a colonoscopy to be unable to see beyond
the obstruction, but that is no reason to feel that everything that
can't be seen should be removed.

Although the fear of cancer brings forth high anxiety, we should
be aware that removing organs arbitrarily does not prevent cancer,
but it will bring on ailments that only the loss of those organs can.

If there is nothing wrong with one's gall bladder, ovaries, etc.,
then why have them removed? Their absence will cause other
problems that will need to be resolved..... You'll have to ask
yourself if you really need more problems to deal with..

Please try to get another opinion from a colorectal surgeon?

Wishing you all the best,

John

annalexandria's picture
annalexandria
Posts: 2322
Joined: Oct 2011

including almost all of my colon, parts of my small intestine, uterus, ovaries and some of the peritoneal wall, but this was done in five separate surgeries, not all at once. I do know someone who had done what is know as "pelvic exenteration", which sounds similar to what your surgeon is suggesting. If you'd like to contact her, send me a PM with your email and I'll send it along to her, ask her to get in touch with you. And a second opinion, like John mentions, is a great idea...this is an awfully big decision to make without as much input as possible. Sensing strength your way-Ann

Lovekitties's picture
Lovekitties
Posts: 2993
Joined: Jan 2010

I agree with the others on getting a second opinion if possible. Your doctor seems to be considering the removal of much more than may be actually warrented. Another doctor may have different options for you.

Did your doctor discuss a J-pouch with a temp iliostomy? In most cases the temp ilio is to allow good healing for the surgery site. If a J-pouch is constructed and the sphincter muscles are in tact, you will have best control possible given the surgery.

At the time of my surgery for rectal cancer, I had a colostomy, removal of the rectum and anus and a total hysterectomy done all at once. While not a walk in the park, it was not as difficult as I had thought it might be.

I too would be concerned about your weight. You definately need to bulk up before surgery, because you may not feel up to 'normal' eating habits for a while. I lost considerable weight, but then I could afford to. I suggest eating often and eating high calorie foods. When my granddaughter was trying to gain weight milk shakes were high on the list of daily intake.

Lastly, I want to clarify something which I am reading between the lines. Removal of the colon and possibly the other organs does not insure that you will not have a recurrance. In fact, colon mets generally form in the liver and lungs. I don't point this out to you to scare you, but I also don't want you to think that just because your colon is gone that you are home free. If only it were that 'easy'. With the colon gone it would insure that it doesn't produce more colon cancer, but it is possible that some of those pesky cells are still around but not visible yet.

I hope that you can get a second opinion, perhaps at a major cancer center, before you make your decision.

Marie who loves kitties

Jaylo969
Posts: 826
Joined: Jan 2010

Hi Carrie,

I have a question....have the doctors said anything to you about FAP? At your age and from some of the things you wrote I suspected that *could* be the reason they want to take your complete colon out.Here is a little information on FAP ( don't know how to make a clickable link...maybe someone else can help?)

http://www.clevelandclinic.org/registries/inherited/fap.htm

Ask your doctors lots & lots of questions.

Best wishes & let me take this time to welcome you to our group. I hope you find us supportive and hepful.

-Pat

thxmiker's picture
thxmiker
Posts: 1278
Joined: Oct 2010

WOW Carrie! First Our thoughts and prayers are with you!

I agree about the second opinion! My surgeon also told me he had done a complete removal of the colon and that the patient was alive 15 years later. He also told me this was an exceptionally rare procedure. (I lost 1/3 of my colon and several feet of my small intestine, appendix, Cecum, etc...)

Read and get informed about your choices. The Anti-Cancer diet is a great read. If something does not make sense it is because it is probably incorrect.

Best Always, mike

carrieh
Posts: 116
Joined: May 2012

It's HNPCC which is why he says to completely remove the colon'
http://www.clevelandclinic.org/registries/inherited/hnpcc.htm

What is Hereditary Non-polyposis Colorectal Cancer?
HNPCC is an inherited colorectal cancer syndrome and accounts for 5 percent of all cases of colorectal cancer. The “H” stands for hereditary, meaning it is inherited or can be passed from parent to child; “N” stands for non-polyposis, contrasting it to the inherited condition FAP where hundreds to thousands of polyps develop in the colon; “CC” stands for colorectal cancer, the most frequent cancer that develops in these families. Patients with HNPCC have an 80 percent chance of developing colorectal cancer.

The cause for HNPCC is due to an inherited mutation (abnormality) in a gene that normally repairs our body’s DNA. There are at least 5 genes that have been found to cause HNPCC. They are called Mismatch Repair Genes. If part of the DNA is not matched properly cancer can occur. Because the HNPCC gene mutation is present in every cell in the body’s other organs can develop cancers too. Cancer of the uterus (womb or endometrium) is very common and may be the main cancer in some HNPCC families. Other cancers can occur in the rest of gastrointestinal tract (stomach, small intestine, pancreas), urinary system (kidney, ureter) and female reproductive organs (ovary).

If colorectal cancer is found surgery to remove the entire colon is necessary. That is because of the high risk of getting additional colon cancers. There are a variety of operations available. Depending on the expertise of the surgeon, any of the following operations can be performed through small holes in the abdomen called laparoscopy or through the standard abdominal incision called laparotomy

I think this is the procedure he is recommending...
Total colectomy and ileorectal anastamosis (IRA)
During the operation, the surgeon removes the patient’s colon but leaves 5 inches of the rectum. The small intestine, or ileum, is then surgically joined to the upper rectum. Afterwards, the patient has normal bowel function.

This is so crazy making..

thxmiker's picture
thxmiker
Posts: 1278
Joined: Oct 2010

WTG Carrie on the research! So many that I have spoke to know little about their cancer. Maybe it is the engineer in me, I had to read everything could find on Signet Ring Cell once I got diagnosed.

I would still recommend a second or third opinion to find a team that you are comfortable with.

Sending our thoughts and prayers to you!
Best Always!
mike

neons356
Posts: 54
Joined: Dec 2010

Hi Carrie,
I'm no expert, but in the time I've been on this board I've never heard of that procedure as a preventive for future cancer. I don't have an iliostomy, mine's a colostomy but again from what I've seen on this board an iliostomy is a lot more problematic than your doctor suggests. The colon removes fluid from waste, so without it your body would be more prone to dehydration, and constant loose stools could be harder to deal with than your doc suggests. It seems to me that your doctor may not be tuned in to how us survivors have to deal with the effects of treatment for perhaps the rest of our lives. I agree with the consensus here, get another opinion

Annabelle41415's picture
Annabelle41415
Posts: 4404
Joined: Feb 2009

Please get a second opinion. My rectum was removed and not a whole lot of my colon and a j-pouch was made but even with having a lot of my colon left going the bathroom 15 times a day is not unusual. I'd be leary with a doctor telling you 3-4 times a day, but then again I'm no doctor and that's why you should get a second opinion. My bathroom issues are mainly at night after eating dinner so if I'm trapped to my bathroom for 1/2 to 3/4 hour it's ok. Please get a second opinion, not only for other opinions but to put your mind at peace.

Kim

Sonia32's picture
Sonia32
Posts: 1069
Joined: Mar 2009

Get a second opinion this sounds very extreme, why can't they try chemo or radio first to try and shrink the tumor? Anyway sending you big hugs.

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

there's a part of me that would ask about connecting to a colostomy bag instead.

makes for living life on your own terms.

just a thought.

JTL52
Posts: 16
Joined: Jul 2007

Dear Carrieh,
I also have HNPPCC.
I went with the choice of Annual colonoscopies.
I had uterince cancer and surgery in 2004
I had colon cancer in 2005, surgery for removal of 1/3 of my colon, then 6 months chemo.
I have been cancer free for more than five years.
I would also reccomend a second opinion.
Really choose carefully, you can always opt to have colon removed at a later date, but you can not undo it once you make that choice.
Best of luck
Janet

steved
Posts: 836
Joined: Apr 2004

You are facing a very difficult decision and whilst there is some good advise above(esp about getting having more than one opinion) the choice ulitmately is yours and which ever way you go is the right way, though they all have challenges to face. Your situation with diagnosed HNPCC is different than most of us and that is why your treatment options are different and more radical. You are young and have a long life ahead which needs to have both quality and as much certainty about not getting further cacners as possible. That is ultimately the decision you are facing.
I can only suggest you get as much info as possible and ensure you have the opinions you want (not everyone finds a lot of surgical opinions useful- too many can in fact be overwhelming and confusing for some people)- then make the decision that is right for you. This group will support what ever you decide and be available for support and advise as you need it.

Steve

steved
Posts: 836
Joined: Apr 2004

You are facing a very difficult decision and whilst there is some good advise above(esp about getting having more than one opinion) the choice ulitmately is yours and which ever way you go is the right way, though they all have challenges to face. Your situation with diagnosed HNPCC is different than most of us and that is why your treatment options are different and more radical. You are young and have a long life ahead which needs to have both quality and as much certainty about not getting further cacners as possible. That is ultimately the decision you are facing.
I can only suggest you get as much info as possible and ensure you have the opinions you want (not everyone finds a lot of surgical opinions useful- too many can in fact be overwhelming and confusing for some people)- then make the decision that is right for you. This group will support what ever you decide and be available for support and advise as you need it.

Steve

marbleotis's picture
marbleotis
Posts: 526
Joined: Mar 2012

Carrie - sorry about your DX. Please get a second, third and fourth opinion. This is radical and "preventative" somewhat. I would seek out the experts and then you and your family can make an informed decision.

deemann70
Posts: 4
Joined: Jun 2012

Im 42 and and found out january i have colon cancer...february removed two feet of colon. I did have pnemoni and spent 29 fun days in the hospital. Im now better and going on my 6th round of folfox chemo. i too found to have genetic background. The dr advised i do the same as you and have complete removal and the small intestine attached. I will be doing this after my last round of chemo in sept. i wish the dr would have done genetic testing before so all removals could have been done with one surgery. you will be in my prayers. please keep us posted.
Many blessings. Darcey

deemann70
Posts: 4
Joined: Jun 2012

Im 42 and and found out january i have colon cancer...february removed two feet of colon. I did have pnemoni and spent 29 fun days in the hospital. Im now better and going on my 6th round of folfox chemo. i too found to have genetic background. The dr advised i do the same as you and have complete removal and the small intestine attached. I will be doing this after my last round of chemo in sept. i wish the dr would have done genetic testing before so all removals could have been done with one surgery. you will be in my prayers. please keep us posted.
Many blessings. Darcey

deemann70
Posts: 4
Joined: Jun 2012

Im 42 and and found out january i have colon cancer...february removed two feet of colon. I did have pnemoni and spent 29 fun days in the hospital. Im now better and going on my 6th round of folfox chemo. i too found to have genetic background. The dr advised i do the same as you and have complete removal and the small intestine attached. I will be doing this after my last round of chemo in sept. i wish the dr would have done genetic testing before so all removals could have been done with one surgery. you will be in my prayers. please keep us posted.
Many blessings. Darcey

deemann70
Posts: 4
Joined: Jun 2012

I forgot to add...Ive been having a lot of cramping and was told its an ovarian tumor...Friday they did a biopsy and I will have the results Wednesday if it is cancer or not. this is one reason Im opting to remove the colon and ovaries. I was told that its not a matter of if i will get cancer again but when because of genetics. Its so expensive to have annual exams and be anxious all the time. If anyone had experienced this please share to Carrie and the rest of us

Fourbusykids
Posts: 2
Joined: Jun 2012

also known as Lynch Syndrome.
I wa first diagnosed with colon ca in Feb 1992 at age 30. I had a foot of colon, 2 feet of small intestine, cecum and appendix removed. This was followed by 6 months of chemo.
Fast forward 20 years to Jan 2012 when I was diagnosed with UPSC (a rare form of endometrial cancer). Had uterus, tubes, ovaries and momentum removed followed bt four rounds of chemo and five internal radiation.
My HPNCC diagnosis was not made until March 2012.
My point is that I was about your age at initial colon cancer diagnosis. I have lived the last 20 years with no cancer, no treatment, and most of my colon. I just had a follow up colonoscopy which was clear. I understand that I will be having these every 1-2 years due to the HPNCC diagnosis. I will also have many other tests much more frequently.
My mother, from whom I inherited this, is 68 and has never had cancer of any kind although she carries the same genetic mutation I do. So yes, your chances of developing cancer (especially colon, endometrial and ovarian) are greatly increased but with reasonable followup you can minimize the risk.
I agree with others who have posted another opinion (or two) would be beneficial.
Good luck with whatever decision you make! I know it is a tough choice you are faced with.

northernlites
Posts: 96
Joined: Jun 2011

Hi Carrieh,
I was diagnosed last May with colon cancer found through colonoscopy. Before my surgery my dr decided to do a genetic test and was found that I had lynch syndrome. He said my chances of getting a recurrance was 85% along with other cancers. I opted to have all of my colon removed. I get check every three months for cea levels and other imaging tests every 6 months. I will say it has taken me a year to feel somewhat "normal" again. After surgery I was going to the bathroom 15 to 20 times a day...loose stools... but now I go about 3 or 4 on a bad day. I do get dehydrated if I don't keep fluids around continually. I have a natropath dr as well that helps me with the dehydration and mineral levels in my body...many herbal medicines have helped with this. I went back to work a few months after my surgery and still working full time.... so you can do this,stay positive and keep a good support group around you.

Tessa

Motocat
Posts: 1
Joined: Jun 2012

My colonoscopy revealed 2 tumors (not related, grew independently) 9 polyps 3 of which had cancer in situ. At age 60 my Dr advised I have the complete colon removed as I am a polyp maker. My doctor later had me tested for Lynch syndrome--don't have it. No family history either. I felt like I had won the lottery when told I could have the procedure that attached the anal canal to the small intestine.

Had surgery May of 2011. In hospital 6 days. No complications. (Ask for the spinal block--much less discomfort.) Had 6 weeks where I had to eat a low residue diet--boring but OK. Was going to the bathroom 4-5 times a day--you can learn your timing by when you eat. Keep moist cleaners and Tucks in all your bathrooms. Can get a little sore. Was a little hesitant to go out for long periods till this stabilized. Now go 2-3 times a day and have a fairly predictable schedule. Not a problem at all. Eat anything I want but some foods don't break down well which will add an additional trip to the bathroom. Do everything I always have and though it changes the contours of your stomach it is not unattractive if you discount the scar.

I had no mets and so far scans are clear and blood work normal. I will have to have a flex symogography every year forever. I turned down preventive chemo based on my prior experience w/lung cancer of which I am a 13 year survivor. Having a lung removed was much worse and has long term consequences I won't go into now.

northernlites
Posts: 96
Joined: Jun 2011

Hi Motocat,
very inspiring story

RickMurtagh's picture
RickMurtagh
Posts: 539
Joined: Feb 2010

Carrie,
It has some time since you posted this and asked for advice, but I have some pretty strong feelings about cancer and the plans we make to combat it.
I had two large tumors in different sections of colon and lots of polyps. We planned on removing the colon, constructing a jpouch and proceeding with the standard chemo and radiation protocols for treating cancer.
Everything went along just like we planned for a while. Then all hell broke lose. Well, it felt like hell - burned like hell too.
To make a long story short, I had to abandon the jpouch and go back to a permanent ileo, I suffer erectile dysfunction and butt leak. This meant losing the last 19 inches or so of small intestine. That section of small intestine absorbes fat soluble vitamins and this results in a compromised ability to absorb needed nutrients.
I am not complaining - I am alive and happy. It is so important that you are prepared to assume responsibility for all the decisions concerning your treatment. Things don't always work out according to plan. Your quality of life will depend greatly on your ability to accept and live with your decisions right now, regardless of the outcome.
You are having surgery in just a few days. Think hard about what it is you expect and be prepared to be flexible and live life as best you can with what you got (left).
peace
Rick

jeanette66
Posts: 1
Joined: Apr 2014

Dear Carrie

Just joined so sorry to be over a year late you probably have your answer by now but I still wanted to tell you my story here goes.

I had my large bowel removed and a pouch made out of my small bowel so no bag on out side pouch on inside, now how many times you go to the toilet is different for each person some go 2-3 times others more everyone is different. I also had my rectum removed but still go to the toilet like anyone else I hope this helps.

 

 

 

toddi1973's picture
toddi1973
Posts: 30
Joined: Oct 2011

Hi Carrie,

I had this procedure done 2 years ago after being diagnosed with Stage 2 CRC and an unexplained high amount of polyps everywhere over the place. FAP and Lynch tests were negtive, so there was no immediate explanation where these came from other than an old colitis.

I had a J-Pouch formed by my surgeon and had a temporary ileostomy for 3 months. After take down, it was rough. For about 4 months my toilet was my primary residence.

However, things started getting much better over the following few months and finally my body had adjusted. I can eat everything and the frequency with the j-pouch is better then it ever was in my pre-cancer ulcerative colitis years.

Talk to your surgeon if he can form a j-pouch and how many he has done. You want a surgeon to perform this that has a good track-record with j-pouches. 

 

Best of luck and if you have any other questions, let me know.

 

 Toddi

carrieh
Posts: 116
Joined: May 2012

Thanks for sharing...two years later, lots has changed and that surgery isn't even an option for me anymore, but maybe it will help someone else who's trying to find information or not sure what to do. Radiation destroyed much of my small intestine, so now I have a teeny little piece of colon and about 2/3rds of my small intestine...permanant colostomy if you want to call it that. Lots of trouble absorbing nutrients, lots of trips to the bathroom, but just had some medication changed around and doing much better the last couple of months. Just happy to be alive and with the ones I love. Welcome aboard, guys...don't be shy about asking questions or just ranting if you need to. This is a great place for advice, comfort, and hope.

Carrie

geotina's picture
geotina
Posts: 2071
Joined: Oct 2009

I have heard of this (removal of the entire colon).  You may find more information on the Colon Club or Colon Cancer Alliance.   There must be a reason the doctors want to remove so many organs so make sure you have a thorough understanding.  If you don't make them explain it to you so you understand and don't let them rush you.  That being said I agree with the others, a second opinion is definitely in order. 

 

Best Wishes - Tina

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