Colitis and hepatitis

After being discharged from our local hospital, I got less than a week at home (most of which was spent asleep) before I started being sick. And being sick. And being sick. And so on. And so on. For 36 hours. Until I threw in the towel and let Alex call the Christie. I guessed they'd make me go back to our local hospital again so I was very pleased when they told us to go straight there and they'd find a bed for me. I packed enough underwear and pyjamas for a 5-day stay, thinking that would probably be plenty. 

HAHAHAHAHAHAHAHAHA.

Five weeks, my friends. That is how long I was an inpatient. FIVE WEEKS. 

They got the vomiting (caused by the hepatitis i.e. liver inflammation) under control fairly quickly but then the diarrhoea started. I'll call it what it actually was - colitis - and warn you that I'm about to get fairly graphic. Feel free to skip the rest of this blog entry if talking about poo in detail is not your thing!

So, the body is an amazing thing and we never really acknowledge just what an incredible job it does until it all goes pear shaped. Just one of the fantastic things our bodies does is take delicious food in through one end, work some sort of mysterious magic via our stomach, bowels and other organs that we don't even need to think about so that we get energy and nutrition, and then....yep, poo! All day, every day, without us needing to think about it. Until it goes wrong. Hello colitis. 

Colitis is inflammation of the colon. And if your colon gets inflamed, you flippin well know about it. Not least because everything that comes out is liquid but, in my case, my bladder stopped working too, so literally everything was coming out of one place. Which meant the skin down there started to break down and cream had to be applied regularly, which is hard when you are going to the loo literally every 10 minutes for hours on end. I'm surprised I didn't wear a path on the floor between my bed and the toilet.

Because my body wasn't absorbing nutrients properly, all my muscle started to break down and the hospital took the decision to feed me through my vein via my picc line (more on picc lines in my next blog). The IV food is basically a bag of nutrients and oil, called TPN, which is short for total parenteral nutrition, and it basically ensures you're getting everything you need. In my case it was particularly tricky because I am vegan, and hospital catering is not particularly geared up for vegans, although all credit to the Christie who sent up the chef to discuss how best to meet my needs. 

Being hooked up to fluids, steroids, anti-emetics, antibiotics and TPN meant I was pretty much on IV something 24/7, so unplugging it from the wall, wrapping the wires up and wheeling it to the loo in the middle of the night became so much of a chore that I eventually gave in and asked for a commode. I think you do eventually reach a point where the bar on your dignity and standards is so low that literally anything will do. 

After 4 weeks of being on top doses of steroids and no end in sight, my consultant suggested an infusion of a drug called infliximab* which is sometimes used for colitis patients. I had a dose of it which didn't work, and then a second dose a few days later which seemed to do the trick and slow everything down. If you've ever had the pleasure of filling in a Bristol stool chart, you'll sympathise with my page upon page of 7s. Imagine my delight when I finally was able to write 6 and then 5! Meaning eventually I could leave.

Those 5 weeks were the absolute pits. I was so ill at one point that, later one, one of the nurses told me they were on the verge of moving me to intensive care. Another nurse was crying because she was so worried about me. I have literally never felt so ill in my life as I did those couple of days. But I also moved to a ward and shared the room with some brilliant ladies who I still think about. One of them, Alice, has a fantastically positive but realistic Facebook blog which I suggest you check out. She is an amazingly brave lady.

*Infliximab - I later found out that infliximab is made using mice cells. To a vegan like me, this sits very very uneasy. Although I needed the medicine, I felt absolutely sickened by being responsible for the torture of mice, whose cells are continually harvested to produce the antibodies needed to make infliximab. To try to make it right, I donated £150 worth of wishlist stuff to our local rodent refuge. I know all medicines are tested on animals, not just infliximab, and to that end, I donate monthly to Animal Free Research UK who are also in my will. I hope one day it doesn't have to be a choice between animal-tested medicines or death.