Hi everyone! I'm new to this forum and I'm so excited to have found a group of people that I can talk to. I used to attend an ostomy support group once a month at the Mayo hospital here in Phoenix but I kinda stopped going. The Mayo has been my home since 2018. Long story… I've had Chron's since 2005. Had a flare up about once a year but I always got through it. I got married around that time and in 2015 we got divorced. I was in shock that I didn't get a flare up since they're always induced by stress. I have three beautiful daughters and we have 50/50 custody so it works. I met my now husband in 2016 and was in the best shape physically, emotionally and completely in remission with Humira. I got married in 2018 and it kills me to say that I spent our honeymoon in bed. I had started getting a flare up and it was out of nowhere. Yea, maybe blending two families together stressed me out. Maybe planning a wedding. I've been admitted to the Mayo 16 times between 2018-2022. And these were 7-10 days stays. After four surgeries and my weekly Humira I'm back to life. Except one issue. I've used barrier rings since my first ileostomy in September 2019. I never had any issues and my bags would last forever. I had to use a convex back because my stoma was in a valley. But then that stoma started causing many obstructions. It became so tiny and narrow that all my food was getting stuck. So finally I went in for my fourth surgery in May 2022 and they cut some intestine to make it narrow again but when I woke up it was on the other side! I had a huge infection on my hip so they needed that to heal and completely changed my stoma to the other side. So now I have a hole on the other side. My daughters can't tell which one is my belly button lol. But ever since I switched sides I've had horrible skin rashes. Literally for almost a year. My bags last at the most two days. I'm always leaking. I've tried everything. I know all the tricks. From the $17 3M 5050 skin barrier wand on Amazon to the little paper ones, to the spray, or the barrier paste, I've even bought TWO laser Wands that help heal skin. My skin starts weeping water constantly and my bags just don't stick. I've taken yeast medication. I have every cream you can imagine. Steroids. I only wash with ivory. I clean it religiously so no stool is left during my bag change. The ostomy nurses and dermatologists at the Mayo haven't even been able to help me. I even wear a belt. I hate wearing a belt. I never had to before. It's truly so depressing. I'm starting to realize it's probably because my stool is mostly water. I rarely have “applesauce looking stools”. I think it might be because I forget to eat sometimes. I know you're supposed to eat 6 small meals a day. But I don't think that's even possible. I finally started working again after 6 years. Everything is so great. But the rash is ruining my life. But I keep going because I finally can live every day outside of my bed crying in pain. So if you ask me if I'd rather have a rash or weigh 89 lbs from Chron's disease pain, the first option will always win. Please please, if you have any advice I can get I'd truly appreciate it. Sorry for the long message.
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