Hi all, I'm not a new ostomate, I've had my ileostomy since 2018 thanks to ulcerative colitis (I perforated). I was doing great with it until recently. I developed a large parastomal hernia a couple of years ago and, as time went on, it began causing quite a bit of discomfort. I saw a surgeon that specializes in parastomal hernias and we decided to go ahead and repair the hernia. Hindsight is 20/20; I wish I never agreed. That surgery resulted in a small bowel obstruction necessitating a second surgery. The surgeon ended up having to take down my existing stoma, resect 8 inches of bowel, and create a new stoma. For some reason, the doctor gave me a loop ileostomy (I had an end ileostomy before). I ended up getting a surgical site infection, an intra-abdominal abscess, and an intra-abdominal hematoma. I spent pretty much the entirety of October in the hospital. I am currently trying to heal from mucocutaneous separation of my stoma. This separation has made it extremely difficult to get my bags to stay on for any length of time. I have tried convex wafers, hydrocolloid sheets under my wafer, stoma paste, barrier rings, etc. I've had some success with trusting, stoma paste, barrier ring, then applying my wafer, but that usually only lasts a.couple of days. Needless to say, my skin is tore up. Unfortunately, I don't have an ostomy nurse where I'm located. Sorry this is so long. I am hoping to be able to connect with other people who have been through something similar. Welcome, @seharbinson. Thank you for sharing your story. That's an unfortunate series of events, and I'm sure things have not been easy without the help of a stoma nurse. Are you able to share some context of your current activities? Are you working, and do you have the time/option to keep your appliance off for a few hours at a time (with something like a small garbage bag underneath to catch any output) to at least give your skin some time to "rest"? That's a strategy I've used myself when my appliance isn't able to stick as good as it should because my skin is damaged or weepy. Even a few hours, a few times a week during an appliance change has been helpful to me. Are you getting any treatment or guidance on managing the mucocutaneous separation? Even though a physical stoma nurse might not be available where you live, have you considered an online stoma nurse via video consultation? Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~
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Topic starter
November 25, 2025 9:15 pm
VeganOstomy reacted
November 25, 2025 9:26 pm