Hello, I am new to the forum but post surgery from 2017. I have had severe skin issues for over 2 years. I’ve been through allergy testing, more products than I care to know about, steroids. Nerve blocks, I am now being prescribed hyperbaric oxygen treatments for 8 weeks 5 days a week 2 hours a day. Dermatologist, etc say they don’t think it’s my skin. I have what I call a moat around the stoma with very icky looking skin. I can’t use any product or rings on the area as it goes into the worst pain , burning and leaking problems. My skin around the aroma the same size as flange is purple. The looked at portal tension but ruled it out. They put me on lyrics . Did nothing. The only thing that helps is to take the bag off and use hydrocodone. I have to change 3 or more time a day. I use simple safe protective sheets which sometimes helps. I can’t function in my daily life to well. Can only sit for a max of two hours before the pain is overwhelming. thoughts?? Welcome to the forums! I'm sorry to hear that you've been struggling like that. It must be frustrating for sure. Do you have access to a WOCN (Wound, Ostomy, and Continence Nurse) who can assess your skin? With everything you've gone through, I can only assume that you've been working with one, but they would be the expert in complicated skin conditions like you describe. Has anyone ever recommended a non-adhesive appliance? Even if you use one until your skin clears up. I can imagine that using adhesive products while your skin is angry is not doing you any favors, and since you've already found some relief when you don't have the bag on, perhaps this might be an option for you. My skin around the aroma the same size as flange is purple. As in bruising? Are you using a convex appliance or any support belts that might be putting too much pressure around/on your stoma? Just your friendly neighborhood ostomate. The non adhesive bags from by hope don’t work due to the ring which causes pressure and the only bone I can use is the moo flat .the purple isn’t bruising they think it’s more vascular and internal. I’ve seen so many wound care nurses . They all just keep giving me more Products. The one I have now is UCSF. She is the one whose sending me to have the oxygen treatments. Do you know if using Vaseline around the sore area might help? I can get it to stick if I’m careful with area and amount. I was thinking if it is leaking but I can’t tell , the Vaseline may help protect. I’m hoping there is someone out there with siliar issues. Another thing I didn’t mention is some of the area under purple skin is hard and sore like scar tissue. Again docs don’t think so but what else could it be. They have done three biopsies and it did show dermal scaring. It’s not a hernia either. I’m am open to any ideas as I am out of them. 
im looking for any ideas anyone may have.
I’m at a loss … bout know I can’t keep doing this. They don’t want to move as it may happen on other side. Im thinking it may be my only option if the new treatment doesn’t work.
~ Crohn's Disease ¦ Ileostomy ~
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March 31, 2022 8:48 pm
April 1, 2022 2:56 am
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