When I was diagnosed in July with AIH, my gastro told me that I had to take steroids and I flat out said no. I know what they do to me, I don’t like it, there has to be another way.
Bless him, he was like okay cool, so you don’t respond well to Prednisolone, let’s put you on another steroid called Budesonide which is broken down in the liver and you shouldn’t encounter so many of the other side effects. You have to go on steroids though because if you don’t, you’ll cause scarring of the liver and then you can’t regenerate from that. You’ll cause permanent damage which will mean a liver transplant, or death.
Annnnnd I ignored him.
Not because I was being a dickhead. Okay, maybe only slightly being a dickhead, but with the care of my bowel, I never really explored trying to fix it with diet or something other than really toxic drugs. I never had the opportunity to explore nutrition or naturopathy. I just went ahead and did what I was told, but this time I said no. This time I stood up and said it is my body and I will decide how I want to proceed with my care.
I want to feed it glorious anti inflammatory foods (which by the way means air. No coffee, no alcohol, no bread no pasta, no cheese, no ice cream, no chocolate, no sweeties, No FUN. NO LIFE!) I need reduce stress, do yoga, maybe buy a juicer, give my shoes to homeless people and the universe went PAH! Looked around and said, guys are you listening to this one? Then put me in hospital for a week with Jaundice.
My gastro came in, stood by my hospital bed and said “I’m sorry”
Mate, why are you apologising? I was all like NO SCREW YOU AND YOUR MEDS, putting my middle fingers up, dropping mics and look where that got me? I ended up in hospital, the place you were trying to prevent me from ending up in. So no. I’m the one that’s sorry and I’m even more gutted because now I had to take the Prednisolone because my liver said “Fuck this shit, I’m out.”
Lesson? Pick and choose your battles peeps. I learnt that when your liver is trying to escape out of your ribcage to roam free in meadows, you should listen to a doctor who has trained for years in what he is practising. This dude isn’t a random hobo in a white coat and stethoscope who rocked up to say “Hey, have you thought about trying coffee enemas?”
I’ve never seen my doctor in a white coat actually.
I’m not saying that I won’t go down the route of natural medicine, because I probably will at some point. I don’t believe that I should be on medication for life, which is what seems to be the general consensus. I’ve been told that diet has no effect on what’s going on with my liver. I find that super hard to believe. Did you know that the liver has hundreds of different jobs and quite a few of them are intertwined with digestion? You’re trying to tell me that the food I put into my body has no correlation with my liver? Hm. I know I’m not a doctor, and I know that I sort of shot myself in the foot by being all gung ho with my approach at first, but I really believe that there has to be a way in which I can manage this condition without having to be on medication for life.
The stark reality of this disease is that if I leave the inflammation untreated, my liver will fail and I will have to have a transplant or I will die.
My concern right now is to get the inflammation under control, which is slowly happening, and then find ways to be able to control it and live the best life possible.
Whilst I completely respect my gastro, I also want to be as informed as possible with my disease and know how it is going to affect me now, and in the future.
My gastro has spent years learning what he specialises in (gastroenterology with an interest in Hepatology) and who am I to go against years of training? At the same time I am more than within my right to question what is best going forward. As a patient I think its right to take a pro active approach in my care, that I learn about the liver and how my disease effects it. Knowledge is power and I want to be in the best position to give myself the chance to lead an amazing life. I don’t want to sit back and be like “Oh sure, you want me to take this immunosuppressant which potentially could give me cancer after years of taking it?” Sorry what? You want me to take meds to control liver disease to then possibly later down have cancer… My odds in this lifetime are not that great.
1 in 250 people in the UK are diagnosed with Ulcerative Colitis every year and its on the up.
20% of those will have surgery
20% of those will have complications.
I landed in all of those.
10 people in 100,00 will be diagnosed with AIH.
That’s pretty rare. I landed in that too. I do not trust myself with any tiny odds.
Wait, maybe I should start playing the lottery?
Sorry, I digress. I just mean that I think its wise to be as informed as possible. I don’t want to be here at 50, if I make it that far, thinking Damn, I really wish I had researched things a little more. We have a wealth of knowledge at our fingertips, it would be a shame to waste it.
Bah, there is no way I’m ending this blog post on such a corny note, and so please check out this song that I found which I think it pretty much how my liver is at the moment 😉