It’s my second meeting with Mr Fitch, the surgeon. We’re waiting in Room 7 with the ominous sub-label “Demonstration”. A tissue covered bed awaits the next person, and the noises of the corridor echo around.
Fitch enters; he’s a tall man with very short hair, glasses and impossibly clean hands. The wrinkles around his right eye are slightly more surprised than the left. I wonder if this is the eye that he uses to look down microscopes. He shoots out a hand at me, and then sideways at Clare. I have my questions spread out before me, a copy for all three of us so we can keep track of the conversation.
My first heading on the list is “What are the implications of doing nothing and continuing as I am?”
Before I even ask the question Fitch is off like a busy man on a bicycle approaching the subject without reference to my sheet. He is talking about the fact that I still need another operation anyway; whatever happens. He’s predicting my questions very well. I wonder how many times he’s had this conversation.
It seems that the tattered ribbon that remains of my gut (rather horribly called the – I hate to even write it – the stump) has been left in case I want to get reconnected. However if I don’t then that too must be removed. So whatever I decide I still face one more sharp encounter. This operation is because the stump itself may have the remnants of colitis and could even later develop into some kind of worse disease. After that has been removed there is no going back. It’s done and I would be a permanent ileostomy. There is a slight risk here of accidentally damaging “the naughty nerves” in which case you are limp and leaky. (Nice)
The next question is about time, do the prospects of successful surgery change with age? Not really it seems. He’s operated on 60 year olds who don’t like the stoma and he’s had 17 year olds who say they’ve had enough and they don’t want more operations.
Next I’m interested to define what is meant by failure. He says this whole question of success and failure is quite interesting. In one sense failure is a j Pouch that has to be aborted, and you have to return to ileostomy as a result. There are a number of possible reasons failure he explains, grabbing my question paper, turning it over and scribbling on the back. (See above) The two main causes of failure seem to be when the join between the newly created pouch and your backside leak. Obviously this is extremely bad news as your body cavity is now filling up with sludge. An anastomatic leak. The other is where an infection works it’s way from the gut outwards through your flesh to the surface – a fistula. Lovely.
It’s to prevent such nastiness that in the UK there are two operations. The first forms the pouch, which is not used for a few months while it completely heals up before it has to deal with any crap. Once it’s been proved watertight by means of a liquid and an X-Ray, reconnection is made and you are back to being a bum wiper. Often in the US he says it's done as one operation but there is a higher chance of a leak / infection that way.
Interestingly he also talks about how success is hard to quantify as well. The fact that you have a functioning leakproof pouch does not, in his opinion, equal success. “I want people to be happy!” he says "Despite continence you may well be going to the loo up to 8 times a day, and you may be unhappy with the quality of your life."
“The thing about you guys” he says “is that you’ve forgotten where you were. Your quality of life was terrible and frankly you were dying. An ileostomy isn’t natural – it takes some management and your skin can be itch and uncomfortable but . . . compared to where you were. The ileostomy is an amazing operation and it’s been around for a long time.” In fact this kind of surgery has been around since the 1780’s or thereabouts.
To find out more about the history of the stoma you can start here http://www.stomaatje.com/history.html
“The 85-90% success rate has to be taken on board very carefully” he says. "If you are one of the 10% of failures, then that’s 100% failure for you. You know it’s OK most of the time to cross the road anywhere, but if you knew you were going to be hit you’d use the bridge 100% of the time”.
That’s true isn’t it.
Post Op monitoring and care is minimal he says. “Once you’ve got that far and I’ve monitored you for a year that’s it. You’ve been prodded enough by then.”
One other thing that might interest you: If you have lost your colon you are more likely to suffer from iron deficiency, b12 deficiency, and get arthritis. There’s also an increased risk of kidney stones of a type that don’t easily show up.
“You have to really really want to have a J pouch. If you are managing OK with your stoma then I would urge caution”
So there we are.
I’d be very interested to hear your views. Would you or wouldn’t you? If you have I like to know about your experiences.
May we live to be 100