As it's coming up to the anniversary of my first (and hopefully last) Crohn's surgery, I thought I would look back at the year prior to my op to see what kind of difference it has made to my life and how I've adapted to living with Crohn's. Anniversary sounds a bit morbid, but i see it as a happy time, a time to celebrate how much has changed in the past 12months.
I've kept a diary since I was around 12 years old, and therefore I thought what better reference material to use to trace my year BC (Before Crohn's)? So as I've taken some quotes directly from my diary scrawlings, please forgive any rambling, I've tried to cut them short! I've used the period from March 2010 (when i started to notice symptoms) through to July 2010 (when I was at my worst and diagnosed with Crohn's) - this post will cover the first part of the year. It was quite strangely upsetting to read over my entries again as it's been easy to forget just how terrible a time it was, anyway here goes.
Monday 15th March 2010-
"..got cortisone injection in my knee today - absolutely awful- was painful and very strange sensation, uncomfortable and unpleasant, had to cling to the chair due to the pain and felt dizzy. Woke up having passed out and thrown up, I'd been held down as I was flaying around on the bed. Mortified.."
This was written when I started my treatment for my arthritis. This should've been the first real sign something was more seriously wrong, joint pain and arthritis is common in Crohn's patients and I'd suffered with since I was around 25. I still cringe thinking about the state I was in in that room.
Friday 16th April 2010-
"..keep getting this really weird pain in my chest and stomach (on left side) which feels like severe trapped wind- really sore though and seems to be worse every time I eat or drink something. Very annoying"
So I guess this is when it started for real - this pain went on for weeks before I visited the doctor, I was embarrassed I'd be turned away for having something minor like wind. Combination of stupidity and previous experiences of being shunned at the surgery.
Saturday 17th April 2010-
"..feeling crap again tonight- still got that weird pain- think it's heartburn - took a Gaviscon so will see if that helps.."
Aww! How cute am I?! Actually burst out laughing reading this, knowing what I know now it seems so naive to think popping a heartburn pill would make a jot of a difference! You have an incurable disease love, Gaviscon won't help you now!
Thursday 22nd April 2010-
"Managed to get up on time today - off to work with the same agonising spasms in my stomach, back and chest now- horrendous"
I was so tired that I'd started sleeping though my alarm and was rushing to get in on time. Was waking up through the night in pain that took hours to dissipate. Bags under my eyes like creepy old caves.
Tuesday 4th May 2010-
"felt sick on way home which led to an awful night. Queasy all evening - couldn't eat and has an absolutely HELLISH headache- then from 8ish was sick constantly till late, horrid, worst I've felt in a longtime, plus headache was unbearable"
Symptoms starting to worsen here- I was clearly in the grip of a flare-up but had no clue. Feel like I want to mop my own past fevered brow reading these. Horrible to recall, keep thinking how hard it must've been for my parents to see me like this, having no explanation and feeling helpless.
Friday 7th May 2010-
"..just had dinner and in lots of pain- feels like it was last month- can't see antibiotics doing the trick to be honest. Dreading work, so worried I'll need more time off.."
Starting to really stress here about what effect this was having on my work and life in general. I was off sick a lot and as I could never give a cast iron reason felt I was being doubted. Pushed myself to pull full shifts when I really should've been in hospital.
Friday 21st May 2010-
"not feeling too good again this morning, in fact mum had to put my shoes on for me as the pain was so bad I couldn't bend over. Walk to work=horrendous - took baby steps as in AGONY. Got to work (eventually) and pain so bad I was in tears"
I remember this day vividly, got sent home and straight to A&E. I remember having to walk so slowly as every step I took was killing me. No idea what I was thinking even attempting to go in, then again I also remember the stress of worrying I'd lose my job. At hospital the surgeon saw me;
"..he was rude and abrupt and told me they won't be ruling out surgery but I've now an abscess which will make operating more difficult, my appendix is the size of a pinkie nail and all my organs have moved to protect it, it would be hard to go in and would leave me in 'an awful mess'.."
This was when they thought I had appendicitis. I didn't. Thank-fully they didn't whip out my appendix and carried out more tests as I got taken into hospital more and more. This surgeon made me feel like I was wasting his time. I am the patient. I do not know what is wrong with me - that's why I am here. I'm the code, you are the code breaker - don't tell me I'm too complicated a combination to crack!
After this lovely consultation I was monitored for a few days, then given more drugs and sent home.
Sunday 6th June 2010-
"..it's 11.15pm and I'm in total agony - stomach is so painful - in fact it's my stomach, ribs, chest, making it's way round my back too. AGONY. gets 10times worse at night when I try to relax - it's almost unbearable, makes me cry and can hardly breathe.."
Can again remember this quite vividly, the pain was so brutal I was sobbing myself to sleep. No painkillers could touch it and I felt there was nothing being done to help. Vicious circle of being punted in and out of hospital - hated the thought of being taken in again.
Friday 25th June 2010-
"..still feel like i need shot.. Aching all over. Doesn't help rushing to toilet CONSTANTLY - my rear is in up-roar and I look and feel like shit ALL THE TIME"
Obviously having an ugly-feeling-sorry-for-myself day here. The relentlessness of the disease can be such that you sometimes feel nothing goes right - and if something is going well some other thing has to go the other way to restore your natural feeling-like-crap balance.
Saturday 26th June 2010-
"..feel awful, terrible toilet trauma - my backside is in agony - bleeding and torn and sore- never gets a chance to heal. Constant chills too.."
Another one of the sexier side effects of Crohn's - it's obvious when you think about (but most people don't) - how can you go to the loo that many times a day without it having an effect on your rear?
Friday 2nd July 2010-
"..I'm in constant discomfort.."
Speaks for itself really.
Friday 23rd July 2010-
"..so it's most likely Crohn's - this'll be confirmed with a colonoscopy later. I've anaemia and low iron levels. J came to see me in the ward tonight. He said 'its hard to say goodbye but it's fu**ing horrible walking away from you, it's awful, unnatural' - I love him."
So girls and boys what have we learned from my year of woes?
Well I'd say, how important it is to trust your gut (literally in Crohn's cases) - if you think there is something wrong with your body you are probably right - you live in it after all.
Don't push yourself, listen when your body tells you to slow down, or else it'll stop you for good without giving you a say in the matter.
Don't sit back and let it happen to you - find out everything you can about your condition.
Oh and that I LOVE to use caps lock for emphasis. I REALLY DO.