Lately I'm having trouble with leaks from my ileostomy pouch! I'm experiencing some open sores and some bleeding around my stoma when I change my pouch! My stoma can get as big as almost the size of a baseball after meals! I was told by the surgeon that it should shrink over time! That was four years ago and it's still the same as it was then! Anybody out there with a similar problem and how did you handle the situation?
Barry Brittain
Hi there, have you contacted your surgeon and let them know what's going on?
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Barry,
Your stoma should NEVER get anywhere near the size you're describing, unless a baseball by you is smaller than a ping-pong ball here in the States. Whoever told you that is a moron. Sorry to be so blunt. FIND ANOTHER DOCTOR AND DO IT FAST!
If any part of your intestine swelled to the size of a baseball, there would be cause for alarm. Your colon has a thicker wall than your small bowel, since it works as a trash compactor of sorts, but it's your sphincter muscle that keeps everything from escaping out your butt. With an ostomy, that muscle is no longer in play, so there's nothing to stop the flow and allow it to 'compact', if you will. So your output should flow out into your bag pretty much unimpeded and not get all bunched up to form something the size you describe.
You have me curious now... what exactly happens after your stoma swells to that size? Does everything come rushing out like an explosion, or is your output solid and firm? I can't imagine living with what you are describing! I think the expression is OMG! Take a pic and show BOTH your GASTRO and your SURGEON... but be prepared to find better docs if either says it's normal! Keep us abreast of what happens.
;O)
I too have an ileostomy. What you describe, I am guessing, is a lot like mine. You say your stoma is the size of a baseball, but in fact, do you mean the whole area? My stoma is a normal size (I believe), but the surrounding area is a mound due to a parastomal hernia. Supposedly, these are not uncommon with ostomies. Some days it is a bit smaller than other days, but always there. I refer to it as my third boob. jb
Agree with the reply from Justbreathe, if that is your situation also. I have a periostomal protrusion which changes shape depending on activity.
For me, the best way to minimize ileostomy leaks because of changes in my abdomen has been: measuring the stoma area when standing rather than lying down, since the protrusion enlarges on standing (measure for the bigger size); placing a Brava Protective Sheet directly on the skin with the sheet's ostomy hole cut about 1/2” larger than the wafer-skin barrier hole; then position the wafer-skin barrier hole over the stoma and press the brown sticky part onto the protective sheet (not your skin); then use 2-3 barrier extenders; then use Hy-Tape to secure the wafer and protective sheet onto my abdomen. The accessories (protective sheets, barrier extenders, Hy-Tape) are covered by my medical insurance (traditional Medicare and supplemental), along with regular ostomy supplies.