I've new here. Ileostomy for 2 years. I have a spinal AVM and bilateral nephrostomy tubes. With the spinal issue, I have no muscle control at my waist/bladder. Incontinence. Pancaking is a big issue. I'm looking for advice on what has worked and not worked for people regarding this. My stoma has gotten longer and wider over time yet it works normally. My home health nurse, who comes every 3 days, helps change 2 pieces every 2-3 days. I can't get more than 3 days due to breakdown of wafer from high output. Needless to say, I'm a 58-year-old mess who's looking for support and someone to discuss my issues with who can relate to what I'm dealing with. The nephrostomy tubes are a whole different story for a different day. THANK YOU TO WHOEVER READS THIS AND REPLIES...I used to be an avid amateur golfer and physically fit. Now I'm retired and learning a whole new life.....this pancaking is hurting me a lot!!!!

This is a remarkable community of 40,830 members.
You will get real advice from fellow ostomates who truly understand you - things you won't find in the books.
And it's not all about ostomy - there is friendship and relationships too.
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Eagles2023
Yeah wow, this site helped so much, I mean really who do you know with this infliction? No one, felt so alone and disgusted by myself every turn.
But it ended up being so damn strengthening, I got fucking moving, really only another choice.
That's
Honesty
Truth
I was damaged by a procedure and ended waking with this, I understand all of you.. perhaps you had to have it, I get it.. doesn't matter either way.
Just wanted to share that
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