It’s felt like Monday everyday this week, I swear! •
On Sunday evening when I was changing my bag I noticed that underneath my stoma there was a small area where liquid output was piling up. I thought it was leaking down from my opening, but I saw it actively seeping from this little raw area under my stoma. I was a little alarmed because I have an end ileostomy, so I know that output is only supposed to come from one opening. I was a little concerned, but crusted the area really well and put a new appliance on.
First thing Monday morning I called my ostomy nurse at Mayo to explain the situation. She suggested going to a local wound care clinic since we live six hours from Mayo. I literally called every single would care clinic in my town (and a few surrounding towns) and none of them would see my because I didn’t have my surgery there. How frustrating. I finally got in touch with one nurse who could see me if my surgeon sent over a referral. Fast forward to today and 35 (yes, I counted) phone calls later, the referral was finally sent and I was told I couldn’t see the ostomy nurse until November 30. That isn’t going to do me much good since I’ll be at Mayo on December 4 for my pre-op appointments for step 2. •
I finally spoke with my ostomy nurse at Mayo and after looking at the pictures I sent over to her, and she my surgeons PA feel that I will be ok until I get to Mayo in December. They said if I start to feel bad of thick output comes out of that area to head to the ER right away. •
They think this may be a mucocutaneous separation or a very small fistula. Either way I’m praying it doesn’t get worse and will heal itself up soon. •
I’m attaching some pictures of what’s going on. Has anyone else experienced anything similar to this? •
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