It seems every time I think I have turned a corner with this disease – I am bought back down to earth with a thud not long after.
Yesterday was the start of a new month – and coincidentally April Fools Day. I felt like I was the only one truly fooled. I thought I was feeling better – apart from my consistent headaches (which can be explained by my medication). I bowled better on Tuesday, I was handling the two jobs better… my creativity had returned… things were looking a little bit up.
I ate a meal I had eaten at least 100 times before on Thursday night and went to bed feeling full – but fine. At 3am it all started. Cramps that would peel paint off the walls. I was confined to our bathroom for the rest of the morning…. I was so determined to get to work, to not let the disease interfer in my life.. but when you can’t stand upright or move more than 1 metre from a toilet… somethings got to give.
I took far too many Panadol at about 7am to deaden the pain… to no effect. I think above all else, thats whats driving me slowly insane. I would be able to have some semblance of a normal life if I was given a pain killer that actually worked. I remember back in the day I used to take the “cocktail” and just get on with it. “The cocktail” consisted of 3 x Apsprin (about 1500mg) 2 x Panadol (about 1000mg) and 2 x Nurofen. For serious pain – I used to sub out the 2 x Panadol for 1-2 Panadeine Fort. You can scowl and look down on me for taking that much pain medication at once – you can do or say whatever you want in fact. But remember how long I have had this for… I was trying t ride out serious flare-ups and bowel obstructions and live my life at the same time. When I found out what I had, had a name – I waved goodbye to all my pain killers and “the cocktail”. When the Panadol didn’t work on Friday morning – I resorted to Buscopan…. I use Buscopan as a last resort as is a drowsy. Within 10 minutes of taking it I am asleep and I stay that way for at least a few hours.
I texted my boss letting him know that I would be late – and he kindly told me not to come in at all, but there was a meeting and I felt like I needed to prove that I could have Crohn’s and still be a productive employee. I fell asleep with my alarm set to extra loud for 8:30am.
I felt alright when I woke up – until I physically got up… it was at that moment I realised I wasn’t going anywhere other than bed or bathroom. After the next wave had passed I again messaged my boss and took two more Buscopan which put me to sleep until 1:30pm. Frustratingly enough – I still wasn’t better by then and spent the rest of the afternoon dashing to the toilet. By 5pm, I had made it as far as the couch…. and thats the furthest I was going to make it that April Fools day.
Okay – so sure, I have a chronic illness and its called Crohn’s – but for sobbing out loud give me some pain medication! They fill me up with corticosteroids and immunosuppressants, tell me that either of those alone could kill me but freak out when I want to take a few Nurofen? This is the bullshit part of having an abdominal condition…. what you can’t take. The fact that you can’t get away from the pain. We can’t take Endone’s or Vicodin because of what it does to the environment in your bowel…. Only in extreme situations (usually post op) are they prescribed.
Finding a cure for these disease is a ways off… they are learning, but I believe they are learning too slowly to cure this illness within my lifetime. So lets stop talking about cure and start talking about quality of life for the people who already have it. People with bowel conditions need pain relief – particularly Crohn’s and Colitis. I know I am in pain pretty much constantly – as my partner said “you have been sick for the last three months – how can you say your treatment is working”. Well, the treatment is – I have been sick like a normal Crohn’s sufferer, I haven’t had a bowel obstruction… but the pain… no one seems to want to treat my pain….
Its true, I hate Crohn’s Disease… but I think I hate the medical profession more right now… for leaving me in pain.