Thursday 6 November 2008

Update 4

Day 17. Four days ago was a momentous occasion for me, it marked the day that my dressing was removed from the last surgery. Its not just the fact that an oversized plaster was taken off, its that this was the first time in almost 17 years that area of my abdomen was uncovered. The scar is still healing and looks like a stab wound, with a dip. There is a circle about the size of a CD where the hair is starting to grow back, although a lot thinner than the surrounding hair and the skin looks very pale. Its very sensitive and strange having this area of skin exposed, I am acutely aware of things brushing against it.

Besides that milestone I'm still having to take one day at a time and some days taking one hour at a time. Overall I'd say there is definitely an incremental improvement but I can't take the periods of respite for the ass burning sessions for granted because when I do it returns with a vengeance. If you've not experienced the flaming of 'butt burn' that J-pouchers can endure let me tell you it is more than unpleasant, its like trying to shit flaming volcanic ash mixed with battery acid. The terrifying thing is when you start and reflexively stop going but know with looming dread that you have to carry on and get the rest out. I've experienced pain with the Crohns and the various surgeries, scopes, needles, dislocated a shoulder, been hit over the head by a kid with a spanner and hit by a car but a burning ring piece takes pain to a whole new level. Its eye-popping. I suppose the fact that its my bumhole thats on fire sounds quite amusing and it is a ludicrously cruel joke that out of the whole kit and kaboodle its the most painful part and most expensive price to pay. But i'm willing to pay it.

I cope with the discomfort in several ways. Hot baths with bicarbinate of soda help, anesthetic creams, deep breathing and overloading my senses with TV, internet, music and writing help take my mind of it. The trick is to try and get enough time inbetween trips to the toilet so my skin can heal and lamp on the barrier cream. I'm avoiding the things that cause 'butt burn' and the sight of orange juice fills me with dread.

Waking up at night is having an effect on my ability to concentrate in the day time and I have not been able to do any work yet. Financially this is a difficult time, I am self-employed and my income is directly linked to my productivity. I knew this was going to be another one of the costs of going ahead with this surgery and realise the risks I have taken. There is no point worrying as that is not going to help me - this was one of the impossible decisions I had to make, the fact that there is never a convenient time to do these things, to go for what we want. I am taking big risks but I am confident everything will work out in the end.