I just don't know anymore

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newbeginning
New Member


Date Joined Dec 2007
Total Posts : 18
   Posted 10/18/2008 4:27 PM (GMT -6)   
Hello to all,
        New to site.  I am hoping someone can shed some light as to what am going through. Yesterday made 3 years of rectal cancer survivor yeah and it's been a long journey.  I have a colostomy for life.  The problem I've been having is with my stoma.  During my journey, I"ve had a prolaspe, ostomyhernia, and a blockage confused .  I had the prolaspe and hernia repaired; the blockage worked its way out.  
         My stoma is what is called an outie, it goes way out.  It looks like a monster, the way it bulgues out, buldeg on top of buldge like just out of a scifi movie. I wish I knew how to make a web page or something like that so that I could post it.  I was very disapointed when I saw that my stoma was not shrinkig as small as others. My wafer size is 2 1/2" and when it bulges I have to wait for it to contract to small and quickly put on the wafer.  I get pain in my lower back and it goes to the left side where my stoma is.  I have taken pictures and video and shown it to my surgen. She doesn't see anything wrong with it.  As long as I have out put all is fine.  I also mention my pain and she referred me to pain management.  Pills don't work. As I type here now I bend over with pain. 
         I also have Sjogren, osteoporosis, RA, hypothroidism, depression.   If you can shed some light I would be grateful.
Cancer Survivor - Colostomy '06, RA, Sjorens, Fibro, Depressed, Hashimoto's


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1246
   Posted 10/18/2008 8:46 PM (GMT -6)   
How long is your stoma? It might be prolapsing if it grows more than about 2 - 3 inches long. Ideally, it's around 1/2 inch to about 1 1/2 inches long but stomas vary. You do not want it flush since that causes problems with wafers sticking.
I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/18/2008 9:03 PM (GMT 0)   
well i am not sure that i understand most of what you are saying, but what you can do is post the pic on a photobucket page, and then give us the user name and password, just use something easy like, 123456 for the password, and dont' put anything else on there. 

newbeginning
New Member


Date Joined Dec 2007
Total Posts : 18
   Posted 10/19/2008 1:00 AM (GMT -6)   
Thanks 4 responding. It took awhile to figure out what I was doing, but I did it. The pics are posted at photobucket: journey_2005 freedom. warning pics are not pretty. As to the prolaspe, my doc said I don't have to worry about ever getting another prolaspe. Some times I wonder.... Since I've taken these pics, my stoma gets bigger then what is posted.

Please let me know what you think.
Cancer Survivor - Colostomy '06, RA, Sjorens, Fibro, Depressed, Hashimoto's


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/19/2008 4:06 PM (GMT -6)   
it didnt' look that big to me, but of course it's hard to tell stuff like that in pics, it is bigger than mine though.
I don't kow what proplapse means exactly though But you could tell that it leans down in an odd way.

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1246
   Posted 10/19/2008 6:15 PM (GMT -6)   
As Summerstorm said, it really doesn't look that big.  However it does look a little pale (or maybe that's just the colours of the pic? - it should be a nice rosy pink colour).  As you said you wait for it to contract before putting the wafer on, could it be you are cutting the hole too tight and that when your stoma expands it gets strangled by the wafer, causing the paleness as it's not getting a good blood supply?  That can cause pain around the stoma site.
 
Good luck.
I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


newbeginning
New Member


Date Joined Dec 2007
Total Posts : 18
   Posted 10/19/2008 8:00 PM (GMT -6)   
Thanks for you input. I removed the pics from photobucket. Didn't really feel comfy havin them out.
Cancer Survivor - Colostomy '06, RA, Sjorens, Fibro, Depressed, Hashimoto's


Tara28
Regular Member


Date Joined Apr 2005
Total Posts : 362
   Posted Today 12:21 PM (GMT -6)   
Sorry you are having troubles. From what you described, I was thinking the same thing as Shaz, but I am no expert. I just got my ostomy last month..

Mine is an "innie" - it retracted and now it's really hard to get the wafers to stay. They always give way on one side ..
Finally I think i have found something with a bit of staying power, but I have to use convex bags and eakin seals .
30 years old, dx with Crohn's in 1998. Currently on Imuran 100mg/day, Flagyl 1000mg/day
and Cipralex 10mg/day for anxiety. Just got off Cipro which was my drug for last 4 years.
Perianal fistula, and 2 more suspected. Crohn's only at end of colon, cecum. Remi and asacol did NADA.


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 10/23/2008 10:04 AM (GMT -6)   
Have you seen a stoma nurse? Sometimes they can be MORE helpful than the doctors!! (don't tell mine I said that...)
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