Ileostomy, anyone?

JanetElizabeth

This is my first time finding this forum, it would have been very helpful when I was scared out of my mind when I was first diagnosed! I just completed treatment 1/24/23 and am so ready for my burns to finish healing and start feeling more like myself. Going through the posts, it seems like a lot of people got through anal cancer treatment without needing a temporary ostomy. My radiation oncologist recommended it as I was already having bowel movement issues prior to diagnosis and said it would make my life a lot easier during treatment. I (unhappily) agreed to it and got an ileostomy the day after Thanksgiving. I’m grateful that it helped me through treatment but I recently had a stoma prolapse and ended up back in the ER. It was an easy fix but now I’m stuck in bed more than I’d like to be because I’m scared it’s going to happen again. I‘m dreading having this stoma for a few more months while I wait for my next scans…and I’m praying the scans are cancer-free so I can get the ileostomy reversed asap!! Has anyone else experienced this?

Janet

reneelgould

Hi, Janet

Got diagnosed with anal cancer in October 2022, started treatment, developed Fournier gangrene, almost died, and got me a colostomy. I know how you feel. I spend most of my time scared. My cancer treatment was stopped halfway thru because my immune system tanked. So I am terrified it will spread while we try to heL the gangrene wound.

I am on anti-anxiety pills to stop the freaking out. I take a deep breath and tell myself I have the best doctors, I am not in a jar on the fireplace and my family is here for me. I also mentally list all the good things I have going and scared feelings seem to move to the back for awhile.

I love my stoma and bag. Before I was stuck at home because of gut dumping. Couldn't go much of anywhere and especially couldn't eat out. I never knew when I would need bathroom with 10 seconds warning. I want to keep mine. But I am weird the family says.

If it prolapse again, they will fix it again. Maybe a ring to hold it in place. I have had a ring holding my stoma until it healed. It comes off next Friday.

Hope you feel better soon