I wonder. The thing about having a stoma is that, although a lot of my friends know about Mr Stoma, it's strange that most people don't. I look pretty much the same as most normal people.
I wonder about this because of the embarrassment that have a stoma really can cause - or at least the embarrasment that it can make you feel. I was out this evening for drinks with friends. I was having a lovely time - give me some wine, some good company and a Friday night and I couldn't really be happier. Everything was paddling along fine, until I felt a slightly familiar slippery feeling. I toddled off to the toilet to check things out and realised I'd left a small pool of shit on the bench seat, in between two of my friends. Now, the joy is that we'd ended up having a late night meal in Wagamama, which for the non-initiated in a chain of slick-but-simple Japanese restaurants here in the UK. So- and this is quite a sad, if fortunate, fact - my pool of faeces looked like a small puddle of katsu curry sauce, which the waitress cheerfully mopped up as if I'd just been a piglet-ishly sloppy eater.
But - it really was quiet mortifying nonetheless. I had to jump in a cab back home straightaway.
This is really what alarms me about the Jpouch operation. As I said, I love having a drunken evening out with friends, but it does lead to significantly more liquid output, and therefore increased leakage potential - which is embarrassing but also a logistical nightmare. So what happens when that's all going on inside you - or leaking out of your rectum (anus? all such lovely words, and I don't quite know which one it should be)? I suppose I'll have to learn to be careful with my diet, and stop worrying. But literally - I do love having a drink and a nice meal out. I'm a bit scared that I won't ever be able to get hammered like I do now - a peculiarly British fear, I'm sure. But I suppose I worry that it's a bit like growing up slightly faster than I'd like. Watching what I eat, what I drink, how late I stay up. Still - it's all saving my life; and at least not-drinking is actually better for you in the long run than drinking...
Friday, 26 February 2010
Thursday, 25 February 2010
Moving on...
Well, it's been an age since I last wrote anything about colon-free existence. Still - not much to report.
I have:
As he led me through the options - keep the ileostomy and have my 'rectal stump' removed (I love these phrases - really makes you feel like an attractive human being) or go for the jpouch. He gave me a long explanation that involved his tie jauntily playing the part of my ileum.
Apparently he has some patients who prefer to keep the bag on the outside - one who wanted to 'go into the bush' - something I'd never do. But it also made me think - surely going out on an expedition it'd be rather harder to fiddle about with stupid little bags, wipes, glue etc. But, I digress. Perhaps it works better for some people, and as I said, something I'd never do - I get a bit itchy if I drive outside London.
It's strange really, because I was rather apprehensive about the pouch operation - not least because it was quite horrendous having the last one and I managed to have all these irritating little complications. He made it sound really quite good, claiming it offered the best quality of life.
Then - 'what did I want to do?' It's strange how doctors always ask you that, considering, really, they know a lot more about it than you do.
So, anyway, I said I'd give it a go. Watch this space.
I have:
- battled Pyoderma Gangrenosum back and forth - almost killed the bastard, then got complacent and it nibbled another grotesque hole in me. Anyway, it's down to a 5mm patch that I conscienciously swab with steroid paste every day. I'm determined to get it back.
- rediscovered my sex life! My long-suffering and wonderful boyfriend gave me time - a long time - to start feeling like sex again. To be honest, it's weird, because you can get out of the habit quite quickly, and when your body doesn't feel... quite... your own, it's difficult to feel sexual. I wonder if anyone else has experienced the same thing?
- worked out clothing options to deal with my slightly altered physique. This actually works quite nicely in the winter - so I've timed the whole thing perfectly...
As he led me through the options - keep the ileostomy and have my 'rectal stump' removed (I love these phrases - really makes you feel like an attractive human being) or go for the jpouch. He gave me a long explanation that involved his tie jauntily playing the part of my ileum.
Apparently he has some patients who prefer to keep the bag on the outside - one who wanted to 'go into the bush' - something I'd never do. But it also made me think - surely going out on an expedition it'd be rather harder to fiddle about with stupid little bags, wipes, glue etc. But, I digress. Perhaps it works better for some people, and as I said, something I'd never do - I get a bit itchy if I drive outside London.
It's strange really, because I was rather apprehensive about the pouch operation - not least because it was quite horrendous having the last one and I managed to have all these irritating little complications. He made it sound really quite good, claiming it offered the best quality of life.
Then - 'what did I want to do?' It's strange how doctors always ask you that, considering, really, they know a lot more about it than you do.
So, anyway, I said I'd give it a go. Watch this space.
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