Shifting Stoma Position After 45 Years: Revision Needed?

I have had a permanent ileostomy for 45 years with no problems at all until recently. Over the past 6 months the opening has gradually moved from dead center of a perfectly formed stoma to being at the top of the stoma and almost to the edge of the abdomen. What will happen if it goes below the abdomen?  Should I look into having a revision?

Hello Oldfogie.

Thank you for posting about this movement of the hole in the stoma, which you describe as a 'problem'.

I was wondering if it causes you any other problems apart from worrying about it.

My stoma regularly moves about, changes shape, inverts and expands but luckily, these changes have not posed any significant problems with regard to its functionality. My biggest problem was when the muscles for peristalsis tighened so tight it blocked the hole altogether and nothing passed through. I fixed this by using a dilator and training the muscles to relax and let stuff through. With that problem solved, I saw no reason to opt for further surgery.

I know from first-hand experience that these things can be very worrying but my take on it is that if the stoma is still functioning and not causing excessive problems, then I would choose to leave things alone rather than opt for surgery.

I hope this helps

Best wishes

Bill 

Hi,  I'm Marsha, and I've had my ileostomy / stoma for more than 50 years.   It started out round and cymetrical, but time, and two pregnancies, plus weight gain and losses, have caused it to shrink, in diameter, and has pulled back into my belly considerably.   I saw a gastro surgeon a number of years ago,  and he said that as long as it works....don't consider surgery.   That's pretty much what Bill wrote...... and that's the consensus I've gotten from other doctors as well.   These days, I do have more leaks than I use to have,  but still plan to avoid surgery as long as possible.  I'm 69.     

Thanks to Bill and Marsha. That relieves my mind a lot. I was just worried about what would happen if it pulled below the abdomen. If I had really thought about it I would have known it would be ok. Just different.  I am a nurse and have worked in nursing homes, home health, and hospice and I was always given the ostomates to care for  I have seen some really weird looking stomas. I guess since it was my stoma I lost objectivity.