Hello! I'm a 36 y/o lady with IC. I've been planning on getting a Urostomy for almost a year now, but due to covid, things were put off for quite awhile. Just got the ball rolling again and may be getting my sugery in just a few months now.
I'm curious if there's anyone else here who got a urostomy due to severe/end-stage interstitital cystitis. I had joined a specific group about this on FB but the group was too focused on religion for me and I was kicked for even asking about it :/
I've been pretty much 99% homebound since the pandemic started because I was already mostly homebound due to IC. I just keep thinking about how I could go for car rides or go hiking during this isolated time, *if* I'd already had surgery. I'm really scared of the surgery itself (afraid of sepsis, I'm emetophobic so Im terrified of blockage or anything that will potentially make me vomit) but I really want to be able to go out into the world again, so it's worth it to me.. Just want to reach out and see if anyone else here has had a similar experience getting an ostomy after IC so I know I can post questions and someone will "get it". (If you're reading this and haven't heard of interstitial cystitis, please read up if you get the chance. Not many are aware of the disease but it is absolutely horrible and they say the pain is comparable to stage 4 cancer pain).
I am in a local support group but we haven't been meeting due to the pandemic. We will have zoom meetings starting next month so that's a relief :,) Anyway, nice to meet ya'll. Glad this is here.
