I've been thinking alot about surgery. It's funny to think that I'm lucky that there is a surgical cure for UC. no colon, no uc. yes, there might be other complications and details to work out, but from what I've been reading, a j-pouch is better than a wigged out colon. i'm just trying to wrap my head around the whole hole issue -- if the j-pouch fails, can i handle having an external setup?
i'd kinda figured i'd end up having surgery, probably 10 yrs after diagnosis. this is all happening really fast. but i don't want to put off surgery too long, then risk more complications from being in worse shape. i guess i'll talk more to the doc on jan 4th and maybe see if he thinks i should meet with surgeons or something now to discuss more about surgery as an option.
hubs criticizes me for googling things, but i consider it research. i'm not an idiot -- i know how to read journal articles. I'm looking at gastroenterology journals, not freaking ivillage posts. whatever. it's my body and my mind. and the more I read, the more I realize that surgery is probably the way to go. i just have to decide if it's worth trying cyclosporine first, or 6mp longer, or just skipping that part and scheduling it up. there's only so much more life i can afford to miss.
plus, getting hit with the 6mp truck actually helped. i'll go for bloodwork next week, but i really haven't felt right the past few days. like super really exhausted. plus all the flushing and puffiness from the steroids... is it worth wrecking other body parts because my colon is all wonky? my immune system has decided my guts don't belong, maybe i should listen? my large intestine is basically getting voted off the island, kicked out of the house, it is the weakest link.
anyway, from reading this article, i just don't know if medical remission is in the cards for me. it sure doesn't sound good. and even if the ciclosporine and 6mp work, how long will it last? i'll still have the time bomb. i'll still have the bazillion pills. i guess i need to do more research. i need to know the average life-after-surgery experience, the best and worst case scenarios, the what i can't and can't do with no colon. like, i know if i'm on long term 6mp and whatnot, i still can't drink, i still can't eat spicy foods, etc etc. but what about post-surgery? i mean, i realize i can't go out for thai food and margaritas the day after surgery, but what about 6 months? a year? 5 years? will i be looking at other surgeries in my 40s? will i be looking back on my 30s and wondering why i let them cut me apart?
Waiting list
1 day ago
1 comment:
Hey. Look, i'm not really sure about offering you advice or guidance, but, well... I'll just say it, you can take it or leave it as you choose...
I tried all the meds accept infliximab (remicade or something in the states I think). Only steroids ever worked. Was told last feb/march time I would HAVE to have colostomy. Choose to fight on. Stayed on steroids but very very very slowly tapered. At the same time I began trying alternatives (what did I have to lose - many many people criticised, from the concerned to the downright abusive) - hypnotherapy, and a bit of NLP. If nothing else, I wanted to get my head into a better space. Anyway, I don't know why, I don't know how it might work for others, but I am just shy of 2 months off ALL meds. Could be remission. Could be luck. Could be conincidence. Could be worth a try?
I'm pretty sure you've visited my blog before. I'm not some crazy born-again advocate for this stuff. But it does seem to have helped me... You know I always go back to that question - what did I have to lose?
I'd be happy to chat more about it - link to my email on my profile page. But i would totally understand if you just think: oh fuck off...
Whatever, take care, and i hope you have a peaceful and merry christmas.
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