Question for Colon cancer Survivors
JennyB
colon cancer. To make a long story short, last March he went in for a
routine colonoscopy (he was diagnosed with ulcerative colitis when he
was a kid and got colonoscopies every two years) and they discovered
his colon was necrotic. They removed the colon and then discovered
the cancer. He is doing SO well and has such a great attitude. He
only has one treatment left. The only thing he is really struggling
with is the decision to get the ileostomy reversal. Some people say
they wish they never had the surgery and kept the bag. Has anyone
here had that surgery? If so, what are your thoughts? Thanks so much
in advance. Jen
No Spam
I've not had the reversal but here is my comments that you may find
helpful in your decisions.
My decision (as a 47yo male) was to stay with the bag. As I was quite
happily and securely married, we had no problem with my image to the wife
and others by having the ostomy. My surgeon gave low odds of a problem
free J-pouch reversal. In hindsight, I would have had problems with the
radiation damage done to my rectum due to the radiation treatments to my
colon that would have made my reversal leaky. Also, with my return of
cancer in the parianal region, the reversal would have created issues
with my current treatment that would have been messy.
I would suggest waiting a year or so to see where things settle before
reconsidering the reversal.
Here are some benefits of retaining your ostomy...
The dumpster has been removed from the playground!
You can now have your name pre-pended with "Bad-Ass"
(i.e. Mr. Bad-Ass Bob Smith)
your farts are now charcoal filtered.
Since you no longer soil the toilets,
you no longer need to help clean them.
You can take a dump anytime you want. Even during church.
Eating spicy food burns only once.
You can brag that the boss "cut you a new one" and prove it.
Any comment or joke you tell is half-assed
There are many more!
Best wishes and good luck!
JC
> Hi all...my husband (age 34) is currently being treated for stage-III
> colon cancer. To make a long story short, last March he went in for a
> routine colonoscopy (he was diagnosed with ulcerative colitis when he
> was a kid and got colonoscopies every two years) and they discovered his
> colon was necrotic. They removed the colon and then discovered the
> cancer. He is doing SO well and has such a great attitude. He only has
> one treatment left. The only thing he is really struggling with is the
> decision to get the ileostomy reversal. Some people say they wish they
> never had the surgery and kept the bag. Has anyone here had that
> surgery? If so, what are your thoughts? Thanks so much in advance.
> Jen
Hi Jen,
I had a chunk of the bowel and 60% of the liver removed back in
March last year. I was on chemo for about 2 months which
achieved nothing positive. In late August last year I went off
chemo and had the ileostomy and chemo insertion point reversed.
I have suffered problems after the reversal but these are due to
the fact that it was the last part of the bowel that was removed.
The part removed is the holding zone whereas the part now
connected is more of a transit zone. What this means, in my
case, is that I get the message that I should go to the toilet
when only small amounts of faeces, or even gas, are present. I
go to the toilet some 10 - 15 times each day This can make
trips away from home a little difficult in that you need to be
close to a toilet at all times. This can vary depending on
which part of the colon has been removed - if it is higher up he
probably wouldn't see this happening.
The benefits of the reversal are not having to deal with the bag
especially at night time when you are sleeping. I had no
control over when it filled up so I had to check mine regularly.
Another problem with the bag is the leaks that can occur
especially at night.
All up there are no real drawbacks and many benefits to having
the reversal done.
--
Cheers . . . JC
CSM
Now you have a response in favor of reversal, and one opposed, both
from informed sources, one of which I found quite amusing as well. I
can't help you on this question, as my colon was reconnected during
the same operation as the cancer was removed, so I never had the bag.
What I can tell you is that I also had stage 3 colon cancer, with a
tumor that nearly blocked my colon. Today, a little over three years
after diagnosis, I'm doing very well and have few problems related to
the cancer, surgery, or chemo. I hope your husband does as well, and
that he is happy with whatever decision he makes on the bag reversal.
---
CSM
Janet Wilder
> On Sep 16, 3:48 pm, JennyB <jkbernst...@sbcglobal.net> wrote:
>> Hi all...my husband (age 34) is currently being treated for stage-III
>> colon cancer. To make a long story short, last March he went in for a
>> routine colonoscopy (he was diagnosed with ulcerative colitis when he
>> was a kid and got colonoscopies every two years) and they discovered
>> his colon was necrotic. They removed the colon and then discovered
>> the cancer. He is doing SO well and has such a great attitude. He
>> only has one treatment left. The only thing he is really struggling
>> with is the decision to get the ileostomy reversal. Some people say
>> they wish they never had the surgery and kept the bag. Has anyone
>> here had that surgery? If so, what are your thoughts? Thanks so much
>> in advance. Jen
I suggest you sign up at the United Ostomy Association board
http://www.uoaa.org/forum/index.php
That is the place to ask questions.
I didn't have colon cancer, just a ruptured colon and I only had my
ostomy for less than 3 months so I am not a good source.
--
Janet Wilder
Way-the-heck-south Texas
Spelling doesn't count. Cooking does.
JennyB
I really appreciate your insight and this will be very helpful. It
will be a tough decision for him to make, but I know he will make the
right one. And it is always encouraging to hear stories of survival.
Good luck to all of you!
Chuck Kopsho
Unfortunately the cancer spread to my lymph nodes.and am currently
undergoing chemo. My oncologist is saying that I have an excellent
chance of getting rid of the cancer cells that remain. My chemo is
supposed to end in November or December (crossing fingers).
Cheers,
Chuck Kopsho
Oceanside, California
Janet Wilder
Best of luck.
CSM
Seconded. My chemo ended in December ('06). Now I can think of my
birthday (in June) as being about the anniversary of my diagnosis, and
Christmas & New Years as about the anniversary of the end of chemo! I
hope you get a mug at the end, like I did. Mine says something like
"Cancer: I conquered; I overcame; on with life". It's a great
reminder of the good people who were doing unpleasant things, but
meant well. They'll be glad to never have to do those things to you
again, just as you'll be glad to not need them.
---
CSM
MARK MCBRIDE
Hi everyone... I have been an ostomate for about 3 years and although
mine was not reversible I did hear from many sources that said after
there reversal they wound up wearing a diaper, wishing they had a
bag.
On the humorous side, growing up my father had a septic tank company
and I often heard the line " your sh-t is my bread and butter". After
my surgery I started a company called Ostyclean that produces and
distributes a system for cleaning ostomy pouches. I GUESS THE APPLE
DIDN'T FALL FAR FROM THE TREE!
Best of luck!
CSM
>
> - Show quoted text -
That reminds me of the humorous coincidence that around the same time
as my nearly-occluding colon tumor was discovered, we had a near-
blockage of our sewer line (tree roots). I'm not sure how many others
found it as funny as I did. Without a sick sense of humor, we tend to
be a bit pathetic. I don't have time for *that*!
---
CSM
Janet Wilder
>> On Wed, 16 Sep 2009 14:48:02 -0700, JennyB wrote:
>>> Hi all...my husband (age 34) is currently being treated for stage-III
>>> colon cancer. To make a long story short, last March he went in for a
>>> routine colonoscopy (he was diagnosed with ulcerative colitis when he
>>> was a kid and got colonoscopies every two years) and they discovered his
>>> colon was necrotic. They removed the colon and then discovered the
>>> cancer. He is doing SO well and has such a great attitude. He only has
>>> one treatment left. The only thing he is really struggling with is the
>>> decision to get the ileostomy reversal. Some people say they wish they
>>> never had the surgery and kept the bag. Has anyone here had that
>>> surgery? If so, what are your thoughts? Thanks so much in advance.
Sorry to jump in late. There are many threads on just that topic on the
United Ostomy boards. http://www.uoaa.org/forum/index.php
Have him register there and search the archives or just ask the
question. They have an entire topic dedicated to just reversals.
I had a colostomy due to a ruptured colon while getting heavy radiation
for oral cancer. I had the reversal just a bit over 2 months later. I am
terribly allergic to adhesives and I tried every product out there and
still had an awful time with the bag. Though I was probably not
physically up to the reversal surgery, I have no regrets. I only lost
about 6 inches of sigmoid colon, however.
CSM
That's about the same amount I lost, also sigmoid. I don't think it's
made any real difference to function, for which I'm quite grateful.
Fortunately for me, the circumstances were such that they did my
"reconnect" during the same surgery as the removal, so I avoided the
bag entirely. Reading here about other people's experiences (like
yours) always makes me feel like I got "cancer light" or something.
With stage 3 colon cancer, and a predicted 65% chance of 5-year
survival, I still had a lot easier time than many others. I can only
hope that as time goes on, detection continues to trend earlier and
treatments continue to improve, and new patients will have a much
easier time of it than I did. Here's to cancer becoming nothing more
than an annoyance, quickly and easily dealt with. To the death of
cancer in our lifetimes.
---
CSM
Janet Wilder
> Here's to cancer becoming nothing more
> than an annoyance, quickly and easily dealt with. To the death of
> cancer in our lifetimes.
>
I raise my glass with you.
Elsie
One more late vote -
Following a surgery for rectal cancer (lost my signmoid colon and
rectum - gained a j-pouch) I ended up with an ileostomy for about 6
months.
I have never regretted the reversal.
Both options came with their own advantages and disadvantages. After
the reversal I experienced cluster bowel movements (you think you're
done - just to have to return to the bathrom a few more times... that
are, apparently, quite common. I felt quite embarrassed the first few
times this happened in public, but got over it...
I am more sensitive to greasy foods, spicy food as well as salads and
other roughage. I avoid them some of the time, indulge them others -
and have become a big fan of Calmoseptine ointment.... (OTC, but you
have to call it in for many, if not most, Pharmacies.)
Elsie