I’m a C5/6 quadriplegic and wondering what questions you would recommend asking. I know almost nothing about the process of getting a colostomy, I just know that I’m so so tired of spending so much of my life doing bowel programs.
What questions should I ask? Is there anything you wish you would have asked before you went into it?
Thanks in advance!
I was commenting to somebody with a stick up their ass, “you must be fun at the D&D table 🙄“ and I got a mod telling me in a very “tut tut“ way to “refrain from name-calling, even if I meant it as a joke.”
I didn’t call anyone a name. I implied that they wouldn’t be fun to play D&D with, and I said that they probably didn’t get invited to parties. Semantics aside, it’s crazy that you can’t reply to mod comments in a thread, so here’s my post and my name calling: ban me you goddamn cowards.
I’m sick of a subreddit with the same opinions over the same 10 people anyway.
I’m 35F with a complete C5/6 injury, Asia A for anybody in the know.
For those who don’t know, quadriplegics have to go through a bit of a ritual to have a bowel movement. Personally, I spend about 2 to 3 hours every day managing my bowel movements. And I’m so tired of this, grandpa!
I’ve seen people in the spinal cord injury sub talk about how freeing having a colostomy can be. I want to talk to the doctor about my options, does anybody have any advice for questions to bring with me?
Things you wish you knew before you got the surgery done? Things you wish you had asked?
Thanks so much in advance!
C5/6 Asia A, injured seven years ago
I was injured when I was 28 years old so I had almost 3 decades of walking experience.
I loathe dreams where I walk again.
The dreams where I walk again are a mix of my paralyzed life and being able to walk. For example, I was laying on my side for some pressure relief earlier today and I fell asleep. In my dream I was laying on my side for pressure relief, same set up as I use in real life, same foam wedge behind me to hold me up, same bedroom. I wanted to get up to take a shower, but I was worried about my foot drop (bad advice on how to handle pressure sores on the bottom of my feet years ago caused both of my feet to drop and the tendons to freeze like that). I slowly flopped my legs over the side of the bed, slowly pressed my feet into walking position on the floor and stood up. I stretched my ankles a bit and I was pleased that it seemed like they adapted to standing just fine.
And then I started getting ready for my shower.
When I woke up in that post sleep fog I tried to move my legs like I did in my dream. Of course it didn’t work. That moment ruins me. Truly, it breaks me in half. Thinking that my legs will move and then realizing it was a dream… I’ve been a puddle since I woke up.
That’s how these dreams always go, I dream that I’m in my real life bedroom, and my real life bed, with my real life physical problems, then I get up and I walk anyway. And when I wake up I try and move and I can’t and then I just fall apart.
I would love to call a friend or a family member and cry on their shoulder about this but I just can’t bring this to anybody with the ability to walk. They’ll all just say, “I’m sorry, that’s awful, I wish I knew what to do to help.“
My family and friends love me so much and I know they’re all heartbroken over my injury just like I am, but they can’t relate. So I thought I would come here and see if anybody has some comforting words or has had similar experiences.