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Could use some advice

coolvdub's picture
coolvdub
Posts: 410
Joined: Aug 2009

Hi Everybody,

It's been quite a while since I have posted here. I just couldn't handle things emotionally that were happening with other members. Sorry for that, but I hope you can all understand it.

That being said. I met with my surgeon last Wednesday to discuss CT scan results and schedule the takedown of my Ostomy. Was hoping it would be a simple slam dunk. Here is what I now face.

Surgeons first choice,
Subtotal Colectomy with Ileosigmoid Anastomosis.

What this would involve is, removing 80-90% of my Colon and attaching what's left to rectal stump. Dr. feels this is best option and smallest chance for leakage at anastomosis. She also brought up that since my Colon is disconnected in two places and they have not been able to get a scope in to rule out no cancer it would be best to remove it. I'm freaking out now, thinking she saw something but doesn't want to tell me, I know it's silly, but the mind does funny things!

What worries me with this procedure, Dr. mentioned I will never have solid BM's again and may have problems with bowel control. I'm to young to wear depends. So this option is not one I'm liking.

Next option,
Keep Colon, but with two anastomosis there is a 10% chance of leakage at sites and she says that is too much risk in my particular case. Also we talked about the possibilty of strictures at the anastomosis sites and the fact that would lead to me having to be on laxatives the rest of my life,to soften the stool so it can pass the strictures. Not liking this option at all either.

My reasoning being, I have spent the last 8 months or so going Organic and have given up Meat and Poultry in a quest to make sure the cancer doesn't return do to GMO food. I bake my own bread, make my own ice cream(my one quilty pleasure) and started walking daily and going to the gym 3 times a week to strengthen my abdominal area for the upcoming surgery.

Another option we didn't discuss yet would be keeping my Ostomy and just going in for a revision to relocate the stoma and get it formed properly this time. The initial surgery for the Ostomy was an emergency surgery and only supposed to be temporary. I have kept it over a year now trying to get healthy enough for surgey and emotionally ready for what may come.

If anybody can share there expperiences with the above, I would love to hear from you. Also if anybody has a recommendation on who I should talk to at UCLA for a second opinion I would be so grateful for that information.

I hope everybody has a wonderful 4th and I should have better insight as to whether or not the cancer has returned next week after I meet with my Oncologist.

Don

SisterSledge's picture
SisterSledge
Posts: 342
Joined: Feb 2011

Hi Don,

I don't have anything helpful to share about your question, but I wanted to say that I'm glad you've decided to return to our group here. I know it is sometimes hard to be here but we learn sooooo much from each other that I say, the more the merrier :)

Janine

coolvdub's picture
coolvdub
Posts: 410
Joined: Aug 2009

Janine,

I came back because this is where the real experts are. Doctors can tell you what they were told or learned in a book,fellow survivors can tell me the real deal if you know what I mean.

Don

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Good to see you, Don! It has been awhile. Boy, when you slip out under the fence you're gone:)

I was spared an ostomy and I have no words of wisdom on this subject as I've got no experience. Though I know "experience" is right behind this post.

I suppose in the end we always choose "the lesser of two evils."

I hope you can get some opinions here to help you weigh the options open to you.

BTW, sounds like you're movin' better than me, I'm a little jealous, LOL!

An old friend
-Craig

coolvdub's picture
coolvdub
Posts: 410
Joined: Aug 2009

Craig,

I'm so happy you are winning the battle, I don't know where you get your reserves from. You are like the Energiser Bunny, you just keep on going. I'm glad you do, you are an inspiration to so many here.

In the end the decision will be based on what will offer me the best quality of life, since this will be a really major decision with no going back if I have the Colon removed.

I have been blessed with finding out about an Organic lifestyle and feel it has really made my current good health and energy levels possible.

Be well my friend.

Don

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
"Surgeons first choice,
Subtotal Colectomy with Ileosigmoid Anastomosis. "

The colon neutralizes the acidic nature of the digestive liquid.
Without the colon, the output will be very acidic, complete
with the burning sensation, skin irritation and the usual subsequent
peeling of skin. If you ever ate an entire jar of hot peppers,
some hot Tacos, and had diarrhea, you will know what to
expect for the rest of your life.

Too dramatic? Shall I tone it down a bit?

Or should I add to that, by telling you that since the liquid will
no longer be neutralized and absorbed by the colon, the liquid
will be plentiful and exit your rear door with all the force of the
worst case scenario of diarrhea that you will ever desire to have.

Re:
"Another option we didn't discuss yet would be keeping my
Ostomy and just going in for a revision to relocate the stoma
and get it formed properly this time. "

You didn't say if you now have a Colostomy, or an Ileostomy.

If removal of the entire colon is necessary, you would be asking
about having an Ileostomy. If your present stoma is a colostomy,
it is on the left side (usually). An Ileostomy will be on the right side.

If the present surgeon formed your last stoma and you are unhappy
with it.............. Good grief man.... Get another colorectal surgeon;
you should have a second opinion anyway.

A good colorectal surgeon will have a "WOCN" spend time with
you, to locate the best spot for the stoma, and the proper 3/4 to 1"
length of that stoma.

A properly formed and placed stoma takes very little to maintain.
It can be easily concealed, and will not interfere with your personal
habits, sexual or otherwise. It is important to have the location
marked for you, and the (good) surgeon will respect the choice,
since it will mean a lot to your overall quality of life. It -is- that
important. Since you already have a stoma that you are unhappy
with, take good measures to insure it will not happen again.

An Ileostomy will mean that you no longer will need to worry about
acidic, burning output.

You will have other issues to be concerned with, like dehydration,
vitamin deficiency, etc., but that can be resolved fairly easily.

You would want to keep in mind, that with each abdominal surgery,
you will have resultant adhesions. Adhesions are a natural thing; it
is the body repairing itself. When the adhesions cause the intestines
to stick to itself, or to other organs, problems can evolve, and possible
obstructions can occur. Your surgeon does have tools; medical
products, to use as "packing" to avoid adhesions. You should ask,
and demand that the use of those products take place.

Hernias also are common with extensive abdominal surgery,
and even the addition of graft material does not always work
all that well.

So the bottom line? You don't want to have more surgery than
you absolutely need; you want things to be done the right way
the first time. The surgeon can say "oops", and tell you it couldn't
be avoided, but you are the one that will have to live with it.

So please, do get another opinion from a qualified colorectal
surgeon that is not of the same organization or group.

And if you decide on an Ileostomy (probably the best choice),
you would want to make sure it is placed exactly where it will
be best for you.

I chose to have it on my next door neighbor, but the surgeon refused....

Stay well.

John

SisterSledge's picture
SisterSledge
Posts: 342
Joined: Feb 2011

"I chose to have it on my next door neighbor, but the surgeon refused...."

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

I agree with John. Get a second opinion. My surgeon told me that leakage at the site was less then 3%. A good surgeon is worth the trouble to find!

My second surgery was done by a medical team and I am sure I got the intern. The recovery time was 5 months. My third surgery was done by a pro and my recovery was 3 weeks! Find a PRO! (Recovery meaning being able to walk two miles without extreme pain. Diarrhea was a different issue.)

Best Always, mike

coolvdub's picture
coolvdub
Posts: 410
Joined: Aug 2009

Hi Mike,

The problem for me is 2% at one anostomy site and 8% at original anastomy site due to prevoius leakage.

The current Surgeon is very knowlegable as far as I can tell so far, but a second opinion will verify my beliefs. At this point the one thing I have is time,surgery isn't scheduled until October, so now I will do my part and research until I feel comfortable with what is being offered.

Don

coolvdub's picture
coolvdub
Posts: 410
Joined: Aug 2009

John,

As usual you are spot on with your information. I currently have an End Diversion Colostomy that is on my right side about 6 inches to the right of the belly button and 3 inches above where my pants waist band sits.

The Ostomy was done during an emergency surgery to remove an Abscess and two days later after I was eating again, we discoverd I had a fistula in my colon allowing fecal discharge out of the open surgical site, not fun!

The current surgeon is new, I wouldn't let my original surgeon touch me ever again. He isn't qualified to remove a tick from a dogs behind. My current problems were all caused by his shoddy work, turns out the Abscess was caused by leakage at the anastomosis site from the original surgery to remove the cancer from my Sigmoid Colon. I had been in pain for months before they finally did something, not to mention he cut through my uritor which had to be repaired by a Urologist during that surgery. Oh and I couldn't walk after the surgery either due to nerve damage. The sad thing is everybody says he is the best in the area, he is a complete hack.

I have had many problems cause by scar tissue and that is why the surgeon that did the emergency surgery had such a problem forming the stoma, which isn't right.

Not sure if the proposed surgery would be considered an Ileostomy or not, since some of the Colon would be saved and connected to the rectal stump, but I have experienced the acidic output and it can sure tear you up in short order. I think my bum would be raw most of the time with option one :(

The current surgeon wants to use Seprafilm to reduce adhesions, so, she seems to be concerned with long term outcome. I am going to try and go to UCLA for a second opinion.

I have been making sure to get plent of water to stay hydrated and am taking natural supplements as well as eating organically to get the most from my food from a nutritional standpoint.

You made me laugh with the neighbor comment, but I wouldn't wish this on any of them.

Don

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

but I just wanted to say HI and good to see you again Don. I completely understand when folks have to walk away for awhile....I have to do it every so often.

I also wanted to say to John--YOU ROCK. Seriously.

peace, emily

thingy45's picture
thingy45
Posts: 633
Joined: Apr 2011

Thanks John,
This is so informative I learned something today.
This board is fantastic with all the knowlegable people on it and all the caring and love for one another.
You must like your next door neigbour a lot I can tell LOL
Marjan

coolvdub's picture
coolvdub
Posts: 410
Joined: Aug 2009

After speaking with Kaiser on the phone about a second opinion, I was basically told not gonna happen. That really made me mad. So I calmed down and collected my thoughts. I then sent an email to the member services department. Apparently I used the right language and got somebodies attention. They are now going to work with me on getting it set up at UCLA.
They are so worried, they even asked if I wanted my surgery done there also. So be persistent and factual with your provider and maybe you will be as fortunate.

Don

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