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Pelvic pain after permanent colostomy surgery.

olgrizz's picture
olgrizz
Posts: 16
Joined: Apr 2013

I am one year post op from a rectal resection with permanent colostomy and still dealing with pain when I sit. Gets pretty severe in the perineal area after a couple hours of driving. Anyone else having a problem? Suggestions?

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I get pain after sitting for a long time because my first round of cancer,the tumor had spread to my tailbone,and everything was scraped clean,so there is no padding there anymore.I can only sit for a short time,and when driving I have to stop every few hours or I get a real bad pain.It helps if you sit on a cushon,but don't use a donut,when you get up after using one,it will pull hard at the center of it,and that will hurt.I have a permanant colostomy since 2008,and it doesn't get better with time,only very little.I hope this helps,good luck.

olgrizz's picture
olgrizz
Posts: 16
Joined: Apr 2013

My incision took months to heal shut and I thought that might have something to do with it. All things aside it's not too severe. Now I have lung Mets to deal with.

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

Looks like you are new to the board and I am glad you are here. There is a wealth of knowledge and personal experiences, along with caring, understanding, and supportive individuals. I don't have any experience with your surgery but I do have mets to the lungs. Any questions, please ask. Just wanted you to know we are there for you........~Ann

olgrizz's picture
olgrizz
Posts: 16
Joined: Apr 2013

Have ten "dark spots" in each lung that did not light up on a PET scan. The largest nodule is >3MM. First biopsy said no cancer, just some histo cells. Lab results later came back as adeno. I  have no symptoms. Onc Doc advised a second opinion so I am heading to Johns Hopkins next Monday for a consult. My Doctor thinks the nudulae biopsied was too small for an accurate diagnosis. Just a lot of mixed feelings going through my head at the moment.

 

sfan428's picture
sfan428
Posts: 32
Joined: Jun 2010

Hi, my situation is very similar to yours and I am being treated at Johns Hopkins.  I have a permanent colostomy and have been having pain near the surgery site since my surgery in September of 2010.  Also, just (2/9) went through a lung resection to remove nodules.  My Dr seems to think that the pain is likely from nerve damage from the surgery and pre op radiatoin.  I have been taking 5mg oxycodone, about 2 to 3 per day to ease the pain and that seems to be the best relief for me.  Anyway, send me a PM if you have any questions or want to discuss treatment at Hopkins.  -shane  

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

I'm only 10 weeks out from the surgery (I lost the rectum and anus) and can't sit even for an hour yet but my doctor suggested a gel seat.  I'm going to try it since I have to go back to work in two weeks and will be required to sit for hours.  He also said pop tylenol whenever needed.  I guess it's just working around the pain instead of actually having a fix.  I was wondering if doing squats would help.  Building up the gluts to replace the missing muscle and maybe build a better support for the area.  I've been on a few support boards will people have the pain for two to five years and for some it's permanent. 

Trubrit's picture
Trubrit
Posts: 5217
Joined: Jan 2013

Don't we wish it could just all be over and we could move on.

I'm sure you're wise enough to know that when you go to work, you take a little walk quite often. 

The gel seat does sound like a good idea. Anything that will help with the discomfort and pain. 

My friends neighbour had his anus closed. Its not something you can really open a conversation with, and I havenn't seen him since my journey started. He had his surgery many years ago and is doing really well. 

Good luck! I always enjoy your picture, I have two grown boys too. 

olgrizz's picture
olgrizz
Posts: 16
Joined: Apr 2013

The gel cushion does some good. I sit on a sheepskin pad at my desk. Found that "doughnut" shaped pads do more harm than help. All things considered, it could be worse.  :-)

Trubrit's picture
Trubrit
Posts: 5217
Joined: Jan 2013

Thanks for the info on the gel pad. I bought a donut for my radiation treatments that are coming up. I will look into these gel pads and sheep skin for sure. 

coloCan
Posts: 1956
Joined: Oct 2009

down as you don't want your legs too far apart,too wide in your stance. I do body weight and DB squats of various sorts and am always aware of my position so as not to rip the skin apart (actually, i'm careful of this no matter what i do....Clear exercise with your surgeon first as you DON't want a hernia or any thing else to strain or impede recovery. )I used to sit on a pillow with a stop watch and would track my daily progress......

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