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I hope someone out there can help me.  I am rather new to the world of ileostomies.  I had my surgery May 6, 2008 because I had a perianal abcess and rectal-vaginal fistulas.  I had previously had an ileorectal anastomosis in January 2003.  Anyway, things were going fine after my surgery in May.  My 'cute' little stoma was nice and pink and had shrunk down to 1".  Then everything changed yesterday.  For some unknown reason, my stoma started to protude from my abdomen.  It became very elongated and red instead of small, circular and pink.  I now have a stoma about 2" long protuding from my abdomen.  I feel like my whole small instestine is coming out!  As soon as I noticed this happening yesterday I called my gastro doctor and he squeezed me in between patients.  He tried to push my stoma back in but all he succeeded in doing was irritating it.  He said that this happens sometimes and it is nothing to worry about.  Well, this morning I called my surgeon's office to get his opinion.  A nurse called me back after speaking to him and he said basically the same thing as the gastro doctor.  The surgeon said that as long as my ileostomy is functioning I have nothing to worry about.  He said that this is not uncommon and that it will eventually pull itself back in.  Has anyone out there had this experience??  It is pretty scary.  I trust my doctors and my ileostomy seems to be functioning normally so I am trying not to worry, but it is very uncomfortable to have this huge stoma hanging there.  Does anyone know how long it can take for this to correct itself???  Is there a chance that it could require additional surgery to fix it if it gets worse?? Could this be the start of another bigger problem???  Just when I was starting to feel better this happens.  Help!! 

 Reply posted for DJ.

DJ - Thanks for your reply.  I was also told that my stoma would shrink but was never told about the protruding or 'prolapse' as they call it, until it happened.  I continued to have more problems after the prolapse - my stoma got darker in color and I noticed blood in my bag.  I went to my gastro doctor who told me that I should go back to see my surgeon.  I saw him today.  He looked inside the stoma with a scope and said that it looked healthy inside so there was nothing to worry about.  He was also able to push it back in so now it looks more normal to me.  He said there is no guarantee that it will stay in.  Sometimes they just protrude for no apparent reason.  He seems to think that my stoma prolapsed because I was sick with a virus which caused a lot of output from my stoma.  I was emptying my bag at least once an hour.  Anyway I have a follow up appointment with him in 3 weeks to see how it looks then.  If it prolapses again I may need to have surgery to repair it.  I am praying that it stays in and that I don't have any more problems.  I agree with you that the gastro doctors don't seem to know a whole lot about ileostomies.  I have decided that if I ever have problems with my stoma again I am calling the surgeon first.  Also, I did talk to my ostomy nurse when this happened and she was very helpful and encourgaging .  She gave me some information and helpful hints that neither the gastro doctor nor the surgeon had told me.  I would recommend to anyone having issues to keep in contact with their ostomy nurse.  I hope that you are doing well after your surgery.  Hang in there and good luck!

 Reply posted for stomagirl.

Hi,

I had an illeostomy for 8 years, and I remember my stoma doing all sorts of weird things.  It would protrude really far, it would shrink up really small--so small that it would cause accidents by squirting "juice" underneath my flange (that's the worst!).  So, for me, changes in size were fairly normal.  I found that they often correlated with my diet.  Fiber, in particular, caused it to do all sorts of crazy things.  Still, it's probably worth having your surgeon look at it just to make sure that nothing's wrong.

 Reply posted for stomagirl.

I just had my surgery on June 5, 2008, so I am very new to all of this.  My doctor told me that my stoma would decrease in size as far as smaller circle but didn't mention petruding out more or changing shape so I would definetly scedule an appointment with the actual surgeon and make them look at your stoma and give you answers until you are satisfied.  I know how hard and scary it is after the operation.  I feel like I've bee thrown out to fin for myself.  We get a few appts. with the surgeons and then we seem to be on our own.  The GI doctors seems to focus on other issues,  At least mine has. It's very emotional and we all need not only to talk to others that are going though this but answers from the professionals.  Let me know how things turn out.  I wish you well.