Ahh, family.
My non-medical dad tried to talk me out of surgery, bc he saw some medical weird show on TV about a woman who had a parasite but was misdiagnosed for a long time. This led him, a former materials scientist with a Ph.D. (um, really???), to tell me I had a parasite, not biopsy-confirmed UC, and that I shouldn’t be getting this surgery.
He even enlisted my uncle, a gen/vasc surgeon, by feeding him a completely false history; I had to call my uncle three days before surgery to get my dad off my back. I concisely described the actual medical course of events; he agreed I was doing the right thing. But he gave me a really hard time about going for the pouch, thought I should just do the ostomy and be done with it. He gave ostomies to his GSW patients in his rural practice, and most never came back to get them reversed. (I believe that’s not because of loving the ostomy over a normal gut, but bc they didn’t have the money. He just figures they were okay that way, but they might have gone to a charity hospital to get it reversed...)
Anyway, what he didn’t understand was that I have really badly sensitive skin that hates most adhesives, so even the temporary ostomies were... awful. Leaked when I’d operate, and I’d be running to the bathroom with a handful of tegaderms to patch it up. There was no way I could do that permanently, not when even the hypoallergenic wafers caused reactions over time. (type IV hypersensitivity, nothing you can do but avoid.) Wasn’t better with second reconstruction, even with newer materials; I became allergic to those, too.
Dad likes to ask me how I’m feeling when I’m recovering from surgery, but he doesn’t actually want to know. He wants me to say I’m fine when I feel like hell. I finally had it out with him one day; now he knows not to ask, unless he wants the truth. I’m not here to manage his expectations, only my own.
My aunt (another non-MD who thinks she knows it all) kept trying to tell me her weird diet managed GI occasional upsets (which probably are due to a parasite) was ‘just like yours’... as someone who was up to 9 surgeries for this (not counting all the scopes), I really didn’t want to hear that from someone who thinks GNC is where real medicine happens.
My mom finally realized the last time we were together (after years and years of nonsense) that her old-wives’-tale derived advice doesn’t help, and that I will figure it out better without the distraction. I think watching me get really sick with hyponatremia and then figure it out and rescue myself was what convinced her that I was better at this than she was. (Not the medical degree or the years in practice.)
My sister knew UC wasn’t contagious, but still changed her plans for a visit with her baby after my diagnosis, ‘just in case’. Yeah, whatever. Went to the aunt’s house instead, and when I confronted her about this, she told me I could go there. 10 hour drive, last minute, and oh, I’m not contagious anymore?
If I sound a little bitter, it’s because I am. Family is supposed to be your support system. They’ve gotten better (mostly) over the past ten years, but there are still some serious issues w Dad particularly. I love them, but I’m glad I live alone. It’s going to be a challenge when I have to be around them more often soon; moving back home, will have to stay with parents for a bit until I can find a house in this ridiculous market. (And then they’ll move in with me.)
I know the post was ostomy vs pouch. It’s a personal decision, really, and my most recent and best surgeon framed it as such. One isn’t better than the other, if everything goes well. It’s just that there’s a bigger chance of things going wrong with the pouch, especially in inexperienced hands. In the right hands, though, I think both are really good options. Just have to make sure you go to the right surgeon. I didn’t, the first time.
Anyway, family issues raised by others really spoke to me. Gotta let go of the grudges at some point; they aren’t healthy. But it’s hard for me to forget, even if I have forgiven. There is so much more I haven’t posted here because it makes me sick to think of, even now.