I have had my ileostomy since 1991 when I was 19. I am now 42 and have started having open wounds develop on the skin immediately surrounding the stoma starting about a year ago. I have never had this occur in all these years. These wounds are not being caused by any excoriation issues, changes in skin care products, my hygiene routine, etc. or anything else I can possibly think of. I am a registered nurse and have very good hygiene and take excellent care of my stoma and use well-fitting appliances. I do know how to properly care for the wounds when they occur, and can get them to completely heal in about a week or so. The problem is they keep reoccurring. I have been to my GI specialist and my GI surgeon. Neither one of them has an explanation of why these spontaneous and painful wounds keep happening to me. The surgeon will not do anything about them unless they become infected, and so far that has not happened. This is just very frustrating and embarrassing because, as you can imagine, my appliance will start leaking at any given time because I cannot get an adequate seal of my appliance when the wound is present. All of my bloodwork has come back normal. However, I have not had any x-rays, scans, or MRI's done. Has anyone else ever experienced these kinds of issues or complications or have any suggestions or ideas on how to stop these wounds from repeating?

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After I got my ostomy I found this site and got a lifetime membership. I have had so much help from the core members, things that even the wound care nurses didn't know. If you haven't been through this journey you don't know - only the people that have experienced this first hand truly understand what your going through. The support is enormously helpful getting through this. Afterwards when you start to learn how to deal with this new normal you can begin to help others. ...mtnman.
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