u/fredom1776

I’ve been in the hospital for several days now battling autonomic dysreflexia again. This time, I’ve been dealing with severe overheating, and it’s been absolutely miserable.
My doctor wants to send me to the Mayo Clinic in Jacksonville, Florida. It really sucks, but I’m hopeful they’ll be able to help me better understand how to live with this condition and manage it more effectively. It’s been a really rough road.
When I got here by ambulance, my blood pressure was incredibly high. They were able to get it down with IV antihypertensive medicine 200/100
I didn’t even think that was possible

I’m currently in the hospital. About a week ago, I had dangerously high blood pressure from autonomic dysreflexia, and now I’m dealing with a serious bowel impaction. I’m going down for a procedure today, and honestly, I’m pretty scared.

We’ve tried everything—laxatives, GoLYTELY, digital stimulation—and nothing has worked. It’s supposed to start as a colonoscopy, but I have a feeling it could turn into surgery.

I’ve also suddenly lost control of my anal sphincter, and my gut motility is extremely low at this point. More than anything, I just want to feel better. I don’t even care if I end up needing a colostomy I am scared..

Had an appointment at Cleveland Clinic yesterday and left feeling pretty defeated. I explained that my bowel program keeps getting worse and is barely functioning at this point. I spend hours every day dealing with it, and between that and the AD symptoms, I just feel awful most of the time.

What’s frustrating is that it feels like every step forward just turns into more testing, more appointments, and more waiting without many real answers. I told them I’m reaching a point where I can’t keep living feeling this sick all the time. We talked about the possibility of a colostomy, which is something I never wanted to seriously consider, but it’s starting to feel like it may become necessary.

The main plan right now is more testing and a colonoscopy to try to figure out what’s happening. I know they’re trying to help, but mentally and physically this whole process is exhausting. Sometimes it feels like my life is controlled by my bladder and bowels instead of me, and that’s a hard thing to accept.