Monday, 1 April 2013
So How Am I?
As regular readers will know, 8 weeks ago, I had yet another major operation to free up my petulant and sticky bowel from the knots and tangles it insists on forming.
I had reached the stage of continual vomiting, terrible pain and food and I were waging our familiar battle. Could I get enough of it in - and keep it in - not to disappear entirely? A shadow against the pillows where Sue used to lie?
After months of prevarication, medics and surgeons finally agreed that "something had to be done". The problem this time was what? Was there actually anything a surgeon could cut away, or open up that would improve my life? Or had I reached That Place?
We don't talk about That Place in our house. It is not somewhere we are prepared to go. It is a place without hope, without joy. A place with no food, where I am fed into a vein, perhaps forever. A place where strong opiates get me through the day, fogging my brain, making me anxious and insular, sweaty and itchy. A place where my world shrinks to the four walls of my bedroom, surrounded by vomit bowl and needles and tubes. A place that doesn't accommodate children or husbands or friends. A lonely place of survival.
After the operation, the surgeon was quietly grim. He explained that my bowl has had so much surgery, it just won't work any more. He insisted vomiting and pain and skeletal fatigue were to be my regular companions. Get used to it. Succumb. Give up.
I ignored him, because that's what I do.
But recovery didn't go well. Sure, the pain eased a bit in the sticky places he had unstuck, but the vomiting never relented, as it normally would. My weight didn't creep back up, I lay pale and pinched against supportive pillows, unable to get to the toilet, unable to eat more than a few meals before my bowel refused to play and returned my food to me un-processed. I lay in bed and watched the days drift by, every day getting more and more frightened that Mr Gloomy Surgeon might be right.
Last week, we dragged me out of bed and into the car for my follow up appointment with Mr Gloomy. I couldn't walk, could barely eat, I looked like a skeleton. He took one look at me and pushed my wheelchair gently into his office.
This time he was firmer. See? Your bowel really WON'T work. We've done all we can. You won't put on the weight, you won't be Mum again, you won't be lover, only patient. His prescription? Go home, be fed into a vein, take regular opiates and anti-emetics and antibiotics and maybe (he paused) think about a transplant? My bowel, he said, was just too still, too sleepy, he had no suggestions for waking it up. Get used to it. Succumb. Give up.
Now I don't do giving up. His advice seemed contrary. If my bowel had gone to sleep, surely sitting around in bed all day would keep it that way? Add in regular opiates and it would sleep even more soundly? Stop putting any food in it at all and it would have nothing to even challenge it back to life? Nothing to contract against?
Something in me got angry. If my choices were : Accept more pain, accept you will vomit a lot OR give up and play dead, it seemed to me it was time to man up still further and prove him wrong. If crohn's and it's effects insisted on taking me to a new level, then I would just have to meet it head on and (excuse my language, sometimes it's all that will do) tell it to fuck right off.
So, from that very moment, I manned up. I got up in the mornings, however reluctant my legs were to carry me. I teetered painfully to the toilet, I inched agonisingly around my nephews wedding at the weekend, chatting to family and friends. (Fell on my arse a couple of times)
I googled "gut motility" and invested in a whole regime of supplements and snacks that might help - magnesium for muscle function, zinc and B12 as I'm always deficient in them, ginger essence for vommy moments, acidophilus for healthy gut bacteria. Folates and Vitamin D to improve my energy. Nuts and dried fruit to snack on for fibre and muscle function. I kicked the opiates into touch. Finally, I started a regime of gently building exercise to improve my strength and deliver me back to the people I love.
I ate, however much it hurt. If I was sick, I... well, I was just sick and got on with it. I went back to my kids and my husband with gritted teeth. That Place is not for me. Not yet. Hopefully never.
We always have a choice. Always.
However bleak things seem, however academically and clinically surgeons and medics make their textbook proclamations, we ARE masters of our own bodies and masters of our own destiny.
Will I succeed? Well, it seems to be going OK so far. It hurts. Whoaaaa it hurts. And it's a little hard to hold a conversation down when my lazy, recalcitrant bowel decides to move into reverse, but it's a billion times better than the alternative.
As for Mr Gloomy, I have a plan. It sustains me through the pain and vomiting and makes me giggle. At my next appointment, I will march into his office on stronger legs and in the nicest possible way, flip him the finger. I will be shinier, fatter, stronger and vindicated. I WILL.
And perhaps he will learn something too. Perhaps he will learn that the human spirit is full of miracles. That there really is no such word as can't.
Wish me luck xx