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!!!!
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