I found this site via Twitter this morning. Figured I'd post to see if anyone would be willing to connect and let me pepper them with a bunch of questions. I'll probably have to put up a second topic to get all of what I'm looking for since my story is a bit unusual.
I was born premature so don't have any eyesight, and also had an ileostomy throughout my entire childhood. I have since had a successful reversal, but within the last few years I've realized that having the ostomy had a pretty big impact on my mental health. I didn't mind the bag itself as it was all I ever knew, but what I didn't like was being completely dependent on others as I was never taught to take care of the ostomy on my own. This led to a lot of humiliation, and in retrospect, a lot of self-confidence issues. I wasn't comfortable with anyone other than my mother or her mother helping me. So if they weren't around and say, a baby sitter was watching my sister and I, or I was spending the night at a friend's house, I couldn't ask an adult to empty my bag for me because I feared they wouldn't know how to do it.
Most humiliating were my earliest years of school when my teacher had to pull me out of class and empty for me. I dreaded that every single day even though at that young of an age I knew it was necessary. That dread intensified if I had a substitute for the day, or when I moved up a grade and got a new teacher who wasn't quite sure how to do it, so I was caught totally off guard when she started emptying but then asked me what to do next, to me, I thought she should have known what to do ahead of time. That has stuck with me, probably because it was extra anxiety on top of what was already there whenever someone knew had to help me.
A Couple years later, around third grade after I'd transferred to a mainstream school my mother tried teaching me to empty on my own, but the second it got difficult she yelled out of frustration and decided it was just easier to go back to doing it for me. She never tried to teach me again after that, never mind the harder process of changing the bag. That experience has also stayed with me because it meant that I would continue to be totally dependent on others, and what school aged kid would want that? What kid would want to be spending a night at a friend's house, be embarrassed when said friend would asked what that big thing was on their side, and then have to find their friend's, (someone else's mother), who they don't really know, and ask them to empty their bag for them and wondering if they could figure out how to do it? At this point for me, they were still thinking I wouldn't be able to be reconnected.
A few years ago all this stuff came up for me in therapy, and I had a good therapist who diagnosed me with PTSD because of that, which is super interesting to explore and is actually what led me to start researching online and find these communities. I've had a couple therapists since who have consulted with their higher ups and they say that experience doesn't meet enough of the criteria to count as "real" trauma. I think they're wrong though.
I still find that I get really high anxiety whenever I try telling someone about having the ostomy, even if it's someone like a nurse who is trained and knows what one is. I DO NOT like sharing this stuff; it's the most vulnerable I ever get. Although, it does get a bit easier once I know the person knows what I'm talking about.
Does any of this make sense? Has anyone else here had feelings that are at all similar to mine? I don't know if my feelings are different/more intense since I was a child when I had my ostomy, but that might make sense. I haven't looked much into how children and young teenagers cope with these kinds of challenges. I never knew anyone else who had an ostomy till I started researching on the Internet. I went to a local support group in 2019 just to try and educate myself. I even told the nurse running it that I wanted to pick er brain because she's exactly the type of person I wish I'd had all those years ago -- a professional who had patience and training who could've taught me to take care of my ostomy independently. I tried reaching out to the clinic at the hospital who runs the support group to see if they would let me meet with one of their nurses to see if they could show me some of the supplies; essentially teaching me what I never learned as a child. Partially because I think it would be cool to see if I could help put together some material that could help another blind person to manage their own ostomy, but probably more so to prove to myself that I could have managed mine on my own. That sounds so weird to say and a weird thing to be passionate about. The people running the group told me I could come to the group when they started it up again, but they never got back to me and they won't let me schedule a one to one appointment because I don't currently have an ostomy and am not planning on getting one.
Anyone here willing to message me and connect via FaceTime or Zoom so I can ask a bunch of questions? I'm thinking maybe talking to another "me" might help me continue to work through the long-term mental health effects this stuff had on me.
Sorry for the novel, lol. Thanks for reading.