Anyone else living with a totally retracted stoma?

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Regular Member

Date Joined May 2009
Total Posts : 194
   Posted 4/9/2011 10:24 PM (GMT -6)   

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VIEW IMAGEPosted: Sun Apr 10, 2011 3:16 am    Post subject: Do any of you live with a "retracted stoma?" VIEW IMAGE VIEW IMAGE VIEW IMAGE VIEW IMAGE

I had an ileostomy performed in Nov. 2011.  Within 4 weeks my stoma retracted; now I have a very small hole in my stomach (smaller than the size of a dime) that I wear a convatec moldable wafer over.  I have 3-4 regular BM's/day and a small amount of pretty liquid waste goes into my bag each day.  My doctor has offered to "revise my stoma" so I won't have problems with leakage.  I don't have any problems with leakage so that isn't a reason for more surgery.  I still have a big decision to make though so any advice is welcomed!  From age 20- age 58 I had constant pain almost every time after eating.  I could hardly ever have a bowel movement and after many, many doctors and many, many tests it couldn't be determined what was wrong.  Finally a doctor said to me, " we could try a temporary loop ileostomy" to see if it improves the quality of your life.  I know this was an extremely drastic move but I was getting so desperate to stop the pain, I "went for it."  At first, after the ileostomy, my stoma "stuck out" about an inch.  The problem was, nothing would come out of it and I had to irrigate it every day (and I thought that was only done if one has a colostomy).  Once my stoma retracted I started to eliminate waste sometimes the natural way and sometimes into my bag (pouch).  More and more, though, I am having pain for hours after eating and nothing is moving.  I just don't know what to do now!  If my doctor "pulls the stoma back out" I am afraid I will have to start irrigating again and I think that is kind of dangerous with an ileostomy (plus very inconvenient).  Does anyone have a similar situation or can anyone give me any advice?  I have been dealing with these kinds of problems for far too long now!  I feel like my whole adult life has been spent trying to solve the issue of stomach pain; I live on pain-killers and other meds!  Help please!

Thanks, Gilda

Regular Member

Date Joined Mar 2011
Total Posts : 103
   Posted 4/10/2011 12:23 AM (GMT -6)   
Oh Gilda I can't offer any advice as far as the stoma goes I debating surgery right now is there any other specialist u could see first or additional tests motility for small bowel endescopy something..... Before you decide on this, sounds like this needs to be investigated more!!!!

I will pray for answers and the pain your having, I'm sorry :-(
dx with uc July '10
Current on going undiagnosed bowel disorder


Veteran Member

Date Joined Feb 2011
Total Posts : 1059
   Posted 4/10/2011 12:38 PM (GMT -6)   
My temp loop ileo retracted and that is why 6 months after I had it done I had a end ileo done instead. They left my colon in place at that time but this was removed 7 years later as it was so badly diseased.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.
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