Skip to main content

Reply to "Living with a bag...."

I've composed several posts on this thread and then discarded them, thinking I hadn't captured the issue quite correctly. It seems like each of us is fighting for something that feels as close to "normal" as we can achieve. The idea of what is closer to (or further from) normal is really very personal - for some it might have more to do with pain, for others appearance might dominate (these are just examples). The fact that this is often a fight may lead to the jarring language, but as others have posted, it's really about a personal struggle, not about others. When I'm up against it, I tend to use stronger language to describe the thing I'm fighting, but it has nothing to do with anyone else's choices.

To get my J-pouch I had to treat an ostomy as a last resort. I had qualified surgeons in multiple cities refuse to create the pouch, for both technical and prognostic reasons. I considered carefully and found a surgeon 1,000 miles from home who agreed to do the procedure (FWIW, it's usually very good advice when a surgeon advises you not to have surgery). I chose a single-stage procedure and thus never experienced an ostomy. That was ten years ago, and for me turned out to be an excellent choice. Not having an ostomy has enabled me to do some things (martial arts, scuba diving) that would have been rather more complicated otherwise.

To do all this I had to make an ostomy the thing I was fighting against. I'm pretty rational, so I prepared for the possibility anyway, and I knew my J-pouch might not last. I never had the thought that I'd rather die than have an ostomy, but each of us struggles differently, and uses different language when in a struggle. Perhaps this should also be a safe place to express ones personal struggle? When I read that stuff I don't take it literally, but rather I think "wow, he/she is in the thick of it!"
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×