Lately I'm having trouble with leaks from my illeostomy 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
Why Join MeetAnOstoMate?
First off, this is a pretty cool site with 33,597 members. Get inside and you will see.
It's not all about ostomy. Everything is being discussed.
Many come here for advice or to give advice 🗣, others have found good friends 🤗, and there are also those who have found love 💓. Most of all, people are honest and truly care.
Privacy is very important - the website has many features that are only visible to members.
Create an account and you will be amazed.
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 excaping 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 unimpeeded 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 to minimize ileostomy leaks b/c 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 skin with the Sheet’s ostomy hole cut about 1/2” larger than wafer-skin barrier hole; then position the wafer-skin barrier hole over the stoma & press the brown sticky part onto the protective sheet (not your skin); then use 2-3 barrier extenders; then use Hy-Tape to secure wafer & protective sheet onto my abdomen. The accessories (protective sheets, barrier extenders, Hy-Tape) are covered by my medical insurance (traditional Medicare & supplemental), along with regular ostomy supplies.