Baglife (part 3)

Having read this far, I'm sure that most of you will be thinking what a wonderous thing it would be to dedicate one's gluteus maximus to the sole purpose of sitting and it is true, there could be some benefits to having an ileostomy - let's see:

• Learn a whole new vocabulary of words (even another use for flange -- my favourite); 
• Free prescriptions (but you have to have cancer as well)
• You get to gross the kids out
• Overcome the irrational male fear of manbags. You need to carry a load of additional clobber wherever you go as an ostomist and hence, not carrying some sort of kit bag is not an option. In addition to all the stuff I'd rather not carry, mine also contains: moleskine journal, favourite ink pen, macbook, iPod, phone, keys - more than enough to make your jacket pockets permanently saggy. Why shouldn't men have handbags too? Not-convinced? maybe I am just gay!
• Lose weight. You can eat pretty much anything you want without putting on weight, I am now a little under 10 stone and I have previously (pre half marathon training) pushed 12 over the past couple of years. That bypassed large bowel is a pretty efficient beastie. I eat crisps like they're made of dried cucumber, cake -- so much cake, biscuits, chocolate to gay abandon, pasties, pies, more crisps. It just doesn't matter. It's like being a 19 year old, high metabolic-rated teenager again. (I probably ought to get them to include a cholesterol count in one of my regular blood tests - that'll be the end of pies).
• Little red card to carry with you which says in capitals "This person has a medical emergency which requires immediate access to toilet facilities", followed by an 0800 number. Honestly! Oh the power! Don't know quite when I'll need it - maybe if my mouth heals up and I lose the power of speech! Maybe when you go to one of those petrol stations having driven for 2 hours with your legs crossed and they say, "Sorry it's for staff only".... I just get out my little red card and I become one of the privileged access-all-areas few. I often wonder what they say on the end of the 0800 number, "...you better had because otherwise he's going to make one hell of a mess in your shop".
• ... mmm now I'm really struggling - can't think of any more ileostomy pros, but that's a fairly compelling list isn't it?... isn't it?

Before you rush out and demand that your doctor install an ileostomy before Christmas so that you can eat without fear of putting on an ounce (or was it the little red card that's tempting you), I have to tell you there are one or two cons as well:

• Smelly! Remember nappies? That's the smell, except adult strength. I carry an air freshener and frankly, you would have to have a fairly low regard for the next user of the loo not to use it. On the plus side, this is only a problem when you're evacuating. Each bag contains a mini-gas release valve fitted with a small charcoal filter to hide the occasional tummy burp. All vegetarians and beer drinkers should have one fitted to their trousers - should be mandatory for tube travel and lifts.
• Broken sleep. Still looking for that first, elusive sleep through the night. Always wake up to drain the bag, usually around 4am, usually struggle to get back to sleep. Draining is a fairly involved activity and certainly brings you back to full consciousness. No amount of stealth seems to work for me, I almost always wake Sarah. Not good, the fairer sex do seem to need their beauty sleep in my experience to avoid the beast taking over. You may remember me drawing some parallels with becoming a new parent is my earlier post - New baby!
• Showering and bathing is a pain. It just takes longer to get through the bathroom, trying to keep your tummy area relatively un-drenched. Alternatively, you can bathe with stoma exposed, but that's a completely different kettle of fish to 'a nice relaxing soak in the bath'...
• Imagine you have absolutely no control over your movements. No clenching; no "I'll just hang on a bit" - just regular peristaltic alimentary canal activity. If you're alive, you're progressing your food through your gut. This means that, every few days when it's necessary to camp out in the bathroom for a good hour to change the whole shebang, you have to get your timing right to coincide with times of minimal activity. Not too close to a meal - that stimulates activity, not too far away - 4-6 hours later and it's on the way out again.
• And here's the biggie... accidents! I'm not a recluse, but I can see how having an ileostomy could quickly turn you into one. There is an almost constant fear of leakage and the inevitable consequence of severely embarrassing yourself in public. I have had a couple of unmitigated disasters and so many near misses. Aside from the inconvenience of having to pull off a complete clean up and change of clothes (from the back of the car; in the disabled loos at the cinema; in the completely inadequate public toilet), it's painful too. The large bowel plays an important role in removing stomach acids and enzymes and these cause havoc with the skin around the stoma. Following major abdominal surgery, it's common to lose a lot of feeling (temporarily??) on the skin of the abdomen as many nerve endings are severed during surgery, and my belly is largely numb. This means that I am not usually aware of a leak before it's fairly well advanced and hence the consequences in terms of soreness and soiling your clothes are that much worse.

I've tried all sorts of things to reduce the incidence of leakage including stoma collars, 2-part bags, hydrocolloid plasters, cohesive slims and powders - all to no avail. I'm fairly convinced that the main problem is that during the first week of the chemotherapy cycle I suffer with an upset tummy which results in more corrosive and thinner digestive tract contents, which in turn breaks down the glue used to stick the flange to my stomach. Of all the things I have had to come to terms with, I think this has to be the most significant because it is demoralising and robs you of your liberty.

It also causes quite a lot of additional washing, which has helped me fix the washing machine whine from which I have suffered since I got married. This whine is not actually made by the machine itself, but the person who usually loads it. Now that I do a significant portion of the loading myself, the whine seems to have stopped. You can't do the washing, so there is little point in complaining about never being able to complete it. You have to get in the washing, splash about for a while and get out again - the  Forth Road bridge still needs painting. If you get to that point of thinking the washing is done then you and your entire family have either become naturist or died. Accepting that the washing can never be completed is preferable to either of these two alternatives. Accidents also seems to improve the ironing hum and the cleaning whirr (I often whizz the hoover around before receiving visitors!).

Less often, but still significantly I suffer leakage during my second week when I am much more likely to be out and about -- ever fancied spending an hour in the disabled loo at the Odeon? Do you know how loud they play the piped music? On this occasion, Henry's birthday, I missed the last 2/3rds of "Up" (in 3D) but I don't feel that my life is any less enriched as a result. It's high time film studios stopped trying to pass off CGI cartoons as feature films. I'll accept the first iterations of Toy Story and Shrek - good story lines, humorous, wide audience appeal, but now... even the kids are getting bored. Steve Jobs - I owe you a debt of gratitude for saving us from crap quality, nasty looking, unreliable and difficult to use computers and consumer electronics both with Apple's own products and the competitive pressure they exert on the others, but the day you sold Pixar to Disney, you sold your sole to the devil.