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colostomy alternatives

rmmedrano
Posts: 3
Joined: Aug 2012

Hi,

My mom was just diagnosed with Stage III signet ring rectal cancer. She has a 6 cm mass at the beginning of treatment. She has started 5 1/2 weeks of chemo/radiation to be followed by surgery that will result in an colostomy. The PET scan showed the cancer in one lymph node but they say they won't know how many lymph nodes it is really in until they open her up. She is also being treated by a Naturopathic Dr. of Oncology to try and reduce side effects and maximize radiation/chemo treatment.

I've read of Dr.'s (like Dr. Marks) who specializes in colostomy alternative surgeries that laparosocopicly remove bad and leave sphincter muscle. Has anyone had this done or any other alternatives? I know there is also a new FDA approved acticon neosphincter that is an alternative that it is still being studied. Has anyone used this?

Thanks for you help!

Coppercent
Posts: 142
Joined: Jan 2012

Sorry I can't be of more help on this one. I do know whether you end up with a permanent colostomy depends on the location of the tumor and in my opinion the skill of the surgeon. The only recommendation I have is to make sure she goes to an experienced colorectal surgeon and not just a general surgeon. When I had my rectum removed my colorectal surgeon was confident that I would not have a permanent colostomy. Through my chemo I sat beside another rectal cancer patient who had my same surgeon and he told her that since her tumor was so low he could not make any guarentees and she might end up with a colostomy. Fortunately, she did not have to have a permanent colostomy and she is doing really great since her temporary ileostomy loop reversal. I will have my reversal in October. I had to wait longer for a slow period at work to take the two weeks off for the reversal. Good luck to your family and I hope that someone on here can answer your question.

Lovekitties's picture
Lovekitties
Posts: 2878
Joined: Jan 2010

I have not heard of anyone here who has been offered or who has had the acticon neosphincter. It is not newly approved. The FDA approval came Dec. 18, 2001.
_____________________________________

Here is part of what was said in that approval:

What will it accomplish? The device may help improve fecal incontinence. In a study conducted within the United States, slightly over 50% of all patients implanted with the device had either a resolution or a significant improvement in incontinence symptoms by one year's time. The most common side effects were pain, infection, and erosion of the device through surrounding tissue. Half of the patients implanted required at least one additional surgical procedure because of adverse events. Thirty percent (30%) required permanent removal of the device within one year because of complications.

When should it not be used? The device should not be used in people who:

are poor candidates for surgery and/or anesthesia;
have obstruction of the bowel; or
have an active infection in the body.
_____________________________

It may be that cancer patients are not deemed good candidates for this procedure.

Whether or not the sphincter can be saved is a matter of location of the tumor and other criteria found at surgery. Laparoscopicty? Do you mean laparoscopic surgery? Again, its use may depend on the location, size and ability to get clear margins.

I have had a perm colostomy for over 2 years and find that life can be lived very well with one.

Marie who loves kitties

rmmedrano
Posts: 3
Joined: Aug 2012

I really appreciate your input. Sorry, I did mean laproscopic surgery. We did select a surgeon in the top 10% in the nation that specializes in colorectal surgery. Our first consultation she said everything would go including maybe the back of her vaginal wall. Of course, we will consult with her again after chemo and radiation. Hopefully, it will shrink enough that a reversal will work later but either way my mom is a strong person and will adapt. I think it's harder on us.

Thanks again,

Rebekah

John23
Posts: 1832
Joined: Jan 2007

Please take some time and visit the United Ostomy Association's
UOAA Discussion Board. There is a wealth of information there
specifically dealing with ostomies.

Saving the sphincter muscle is of -great- importance, and most
colorectal surgeons do whatever they can do to save it. Doing so
helps with the patient's quality of life long after the event of surgery.

As far as having an ostomy? The statistics seem to indicate that
those that have suffered rectal cancer do better after the surgical
removal of all cancerous tissue, than those that attempted to save
tissue to avoid having to have an ostomy.

Or more simply, not being too vain may very well save one's life!

There are worse things than an ostomy, just ask around.

Please visit the UOAA website?

Best wishes for you and yours,

John

rmmedrano
Posts: 3
Joined: Aug 2012

Thank you so much for your input. I will look at the website. I just want the best care for my mom and want to gather as much information as possible so we can make informed decisions. I really appreciate everyone's help.

Thanks again,

Rebekah

jomar
Posts: 11
Joined: May 2011

My advice is to talk to people who have a colostomy. Your mother will have to be very strong and need a lot of support. Maybe another pet scan after chemo/ radiation will help. God bless you for doing some home work first.

rsnyder
Posts: 18
Joined: Jul 2009

My son has an app't with a CR Surgeon at the mayo clinic 10/3/12 in Minnesota. He has been
NED since 09/09/12. In this last year he has lived in the bathroom and it has been a nightmare! He was diagnosed in 5/12 of Stge 2B Colorectal Cancer at the age of 38. His wife left and he is raising his son. He is trying to decide whether to have the permanent colostomy, see if Mayo Clinic can give him a j-pouch and redo his initial surgery. After all of the radiation his rectum was distroyed and one foot of his colon became his rectum with NO j-pouch. His surgeon says that it is just a straight pipe now. Everything he eats now runs him to the bathroom. The colon used for his rectum was also damaged and so the rectum is now very narrow. I am concerned for him to go across the country and be promised a surgery that make his life more normal as before or just wasting a lot of money and more health issues. Help! I haven't been on this site in a long time. I would appreciate any advice.

John23
Posts: 1832
Joined: Jan 2007

(I had to go look at my calendar.... the dates you listed aren't quite right!
No biggie...)

Re:
"....... He is trying to decide whether to have the permanent
colostomy, see if Mayo Clinic can give him a j-pouch and redo his
initial surgery........"

".........I am concerned for him to go across the country and
be promised a surgery that make his life more normal as before or
just wasting a lot of money and more health issues....."

It's never a "bad idea" to get another opinion, although it would have
been better to have gotten one prior to his initial surgery. But prior to
any more surgery, it's better to "ask around" first!

"Re-doing" surgery to fix or repair another surgeon's work, doesn't
always work out too well. It's like trying to find an auto shop to
work on an engine that's been rebuilt by a home mechanic.

That said... Tell your son to go to the UOAA web site and read
the forum postings. Most of the posters have had surgery for reasons
other than cancer, but they can tell him a lot about having an ostomy!

They also can tell him a lot regarding rectal surgery, and about the
problems with "J-Pouches" vs a colostomy pouch.

I'm sure that your son wishes to do what will be best for him long-term,
not just for appearances, or just to relieve the immediate problems
he's having. He's got the time to gather information, and he should
be doing just that if he wants this to work out well.

Most of us here haven't had the time to get "other opinions" prior
to the removal of a tumor that had been causing a blockage, or
one that needed immediate attention, and some of us continue to
pay the price of some physician's poor opinion made under stress.

So tell him to get that "2nd opinion", and get a third and fourth, if
he's still not satisfied. You can only do some things once, and it's
better to make sure it's right the first time.

May great health be coming his way! (yours too).

John

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