Question for those who underwent abdominoperineal resection (APR) with permanent colostomy

lizard44

After  just over two years of keeping the beast at bay via chemo (FOLFOX plus Avastin), chemo-radiation, more chemo (irinotecan + Erbitux), an ablation of liver mets and still more chemo (irinotecan + Erbitux) the surgeon now thinks we should go ahead with abdominoperineal resection (APR) surgery. He is concerned if we  put  it off much longer the residual tumor that's there now could spread and affect  surrounding areas, organs, or possibly the tailbone so we're working on scheduling for early October. I had my last chemo before surgery yesterday and the oncologist  recommends I continue with maintenance chemo following surgery.  I'm one of those people who does better with procedures the more I know about them beforehand, so I've been reading up on the surgery on the NIH site and in medical journals, even made the "mistake"of  watching some youtube videos and have some questions for the surgeon before we schedule the surgery. Most of what I've read on the NIH site is written by researchers and  doctors FOR doctors and I was wondering if any of you, as patients, have a different perspective or any questions you didn't think to ask before surgery but wish you had? Thanks for any  additional input.

Grace/lizard44

lp1964

Dear Friend,

I had that surgery 4 years ago and they even had to shave some of my tail bone because they wanted clear margins. Thank God everything went well.

1. They gave me the option to use my right abdominal muscle to fold it down as a flap to strengthen the pelvic floor to prevent the intestines to sink into that space. This flap is also used to close the anal area so we don't have the so called Barbie Butt where the "crack" is very shallow.

The other thing is the location of the colostomy. Make sure it's not close to the belt line. In my opinion the best location is 4 inches (10cm) to the side of the belly button and 1-2 inches (3-5cm) down.

all the best!

Laz

lizard44

lp1964 said:

Dear Friend,

I had that surgery 4 years ago and they even had to shave some of my tail bone because they wanted clear margins. Thank God everything went well.

1. They gave me the option to use my right abdominal muscle to fold it down as a flap to strengthen the pelvic floor to prevent the intestines to sink into that space. This flap is also used to close the anal area so we don't have the so called Barbie Butt where the "crack" is very shallow.

The other thing is the location of the colostomy. Make sure it's not close to the belt line. In my opinion the best location is 4 inches (10cm) to the side of the belly button and 1-2 inches (3-5cm) down.

all the best!

Laz

Thanks, Laz

I thought I had remembered somebody mentioning a flap- it must have been you.  That was one of my questions for the surgeon- I was  concered  about the void left- woul it fill with fluid, would organs prolapse, etc. As far as stoma placement,  I'm so small there may not be much choice where to place it, but I'll add that to my  questions list.

Thanks again-

Grace/lizard44

lp1964

lizard44 said:

Thanks, Laz

I thought I had remembered somebody mentioning a flap- it must have been you.  That was one of my questions for the surgeon- I was  concered  about the void left- woul it fill with fluid, would organs prolapse, etc. As far as stoma placement,  I'm so small there may not be much choice where to place it, but I'll add that to my  questions list.

Thanks again-

Grace/lizard44

Whet it comes to it...

...let's communicate about the colostomy. It takes a long adjustment, but I worked out a method where I do t even have to wear a bag, only a tiny patch and it's so comfortable and convenient that I often joke that I have less bathroom issues than normal people.

I wish you the best possible outcome.

lizard44

lp1964 said:

Whet it comes to it...

...let's communicate about the colostomy. It takes a long adjustment, but I worked out a method where I do t even have to wear a bag, only a tiny patch and it's so comfortable and convenient that I often joke that I have less bathroom issues than normal people.

I wish you the best possible outcome.

I'm looking forward to less bathroom issues.

Although I don't really know who or what is considered "normal" anymore- there's always a "new normal"  to get used to, it seems. Having  had IBS most of my adult life, I haven't been able to eat out in a restaurant for years, always try to make morning appointments  because if I have to go somewhere I can't eat beforehand, and have to make sure I know where the restrooms are  everywhere we go. I'm not looking forward to the surgery, recovery period and what not, and anticipate that it will take quite a while to get used to, but  in the end  the idea of a colostomy  is somewhat liberating, in a strange way. I just hope the idea and the reality aren't too far apart. I'll be interested to hear your "method"and more about your patch. That sounds intriguing. 

Grace/lizard44

 

Kazenmax

APR

Grace,

I had the APR surgery May 2016. I also had my abdominal muscle used to do the flap surgery. I had a vaginal/recto fistula that also needed repair and the flap was used to do that. The surgery also used liposuction to get some fat from my waist and use it for the flap area to "cushion". I wish I had insisted that the lipo be done on both sides of my waist as now my stomach is a little misshappened. They took the fat mostly from one side.

My recovery from surgery took about 6 months. It's an area that is difficult to heal. I also wish I had understood the extent of the scar on my belly. Durin the prep for surgery they used a marker to see where the incision would be. It runs from just under my breast to my groin area. It took 73 staples to close. Right before surgery the doctor said something about how I "might" lose my belly button. I was totally fixated on that issue. Funny now but that was the thing that made my cry.

It's been over a year now and I think I have adjusted well to my life without an anus. And then there are days that I hate my situation. The days that I get to be with my son and my grandchildren are the good ones. 

Good luck. One foot in front of the other. 

k

danker

Chemo

I had chemo and radiation 6 weeks prior to my resection.  My oncologist wanted me to get more chemo after the resection.  The surgeon didn't think it was necessary.  The surgeon won out,so no more chemo.  I have been NED the 7 years since my resection.  Go figure!!!!