Mad March hares

Hello again. A few updates since last time.

1. I'm apparently all booked in for stage two - J-pouch creation. I went in to Mr Tekkis at Chelsea and Westminster Hospital a couple of weeks ago, and he decided I'd be ok to go ahead. I needed another two stages - one to get the pouch made, after which he'd do me a loop ileostomy (as opposed to Mr Stoma - he's currently an end ileostomy), and after ten days or so in hospital, I'd go home and rest for about two months in total. Then I'd be whisked back in to have my 'take-down' - for the unfamiliar, this is where they reconnect everything and you can start to export waste in a relatively normal way. Hooray!

2. Health insurance. It seems salient to discuss this given the exciting news in the US. After my meeting with Mr Tekkis, I toddled home to find out if my private health insurance would cover the next ops. For those not familiar with the UK health system, anyone can get pretty much anything they need for free (well, free at point of need - you pay for it with taxes etc but it seems nice and free at the time) - so you don't need private health insurance (and in fact, philosophically/politically I'm quite against the whole concept). However, I do have health insurance - my mother pays for it, which is one of the more embarrassing things that a 26 year old man can say. And despite my ethical objections, I'm more than willing to take advantage of a guaranteed private room, lax visiting hours and decent food when it's on offer. Champagne socialist, that's me.

Coincidentally - I also recently started reading Stephanie's Story, which is written by quite an amazing young American woman who has faced similar procedures to mine, and done so with an brilliantly cheery outlook, which is both excellent and inspirational. And a major concern for her had been being in between operations and illnesses but not having health insurance. Now, obviously, I'm not naive - I know a lot of people in the States are uninsured, which is what the whole legislative process that's just coming to an end has been all about. But actually reading about the different ways she's worked around this - it's completely unbelievable. Having hot showers and yoghurt in the hope of clearing blockages, because you can't go to A&E; not being able to see the stoma nurse; having to pay for medicines and stoma supplies... it's just bizarre that in the world's wealthiest country, that's happening for anyone at all!

So anyway, I give thanks for the NHS, which for all it's flaws has saved my life at least twice, kept me in free medication, free stoma supplies, excellent postoperative care and follow up, without once having to worry about whether I could afford it or not.

3. Stoma practicalities - I realise I haven't ever really spoken about the little things that make a difference to me, day-to-day. There's been a few things recently. In particular, I'd always had trouble getting the bag to stick to me successfully for a full day - I think this was partly because my stoma wasn't terribly well sited before the op, and partly because of both my pyoderma and the scarring that it's left behind. I tried an Oakmed 1-piece bag for a while, which were just super for adhesion, because they combined a tegaderm-type, really sticky, thin film type area with an ordinary yellowy zone (brilliant technical language, here - my apologies).

To be continued...

Social situations

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...

Moving on...

Well, it's been an age since I last wrote anything about colon-free existence. Still - not much to report.

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...
  

Which brings me on to my next point. I went to see my surgeon at Chelsea and Westminster last week and he raised the possibility of the next step - J-pouch life!

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.