When you literally can’t get out of bed.

On Thursday morning, I awoken in the most excruciating pain I’ve ever experienced.
I’ve been pain free in my gut for the best part of a year thanks to the Humira and my general pain has been manageable to a certain level on a daily basis. But starting this new course of steroids and Mercaptopurine last week really threw my body for six.

I literally couldn’t move. I was in agony, my back felt as if someone was squeezing and pushing it down at the same time, whilst the pressure in my chest couldn’t be stopped by some breathing exercises. It was horrible. I got more and more anxious; knowing I had to work all day, have a blood test and return lots of emails and phone calls.. I couldn’t even get up and go to the bathroom.Β  I was dreading the time when my bladder and bowels reacted to all the stress. I got more and more wound up knowing full well how bad I made myself when I stress out.
I got my dad – who is home post op from Gallbladder surgery – to call work and explain how unable I was to move. Then I got my butt on the phone and called the IBD nurse for advice. I was sure it was the Mercaptopurine and I was most definitely not taking it anymore.

The GI and I had always talked about my last hospital admission being because I was unwell enough to re capture C Diff and Shingles at the same time whilst being in a immune suppressant like Azathoprine. However, the reality is that Azathoprine caused my infections. And the Mercaptopurine – a purer form of the same ingredients as Azathoprine – was doing the same thing to me now.

Gut pain is one thing. Other pains whilst knowing you have Crohns is another. I have a lot of newer found respect for people who suffer with back pain and Arthritis. The feeling of being even unable to turn over in my double bed for comfort was unbearable. I got so upset every time I moved that I just cried in pain. I was distraught. I was doing so well up until my medications changed! I was now living a life of pills and blood tests again. I honestly wondered how long it would take to descend into the depth of the hell I once had 18 months ago… It was a bleak morning.

Luckily, once I was full of painkillers, I was able to get up, slowly and carefully and do some light exercise to loosen my joints; although the pain in my back and chest took 36 hrs to really clear my system, I was grateful for just being able to walk, albeit slow. Finally the IBD nurse called back and stopped my Mercaptopurine and booked me into clinic. Now I am just waiting. Taking daily Pred and waiting. Managing my pain and waiting. Eating small meals and most likely flaring. But waiting.

I went to work yesterday because one day without pay was enough. With no sick leave or holiday to use, I take a cut in my weekly wage and have to live with the consequences of being unwell, chronically unwell, in the youth of my life. I turn 25 in April and I feel much older than that with my Crohns and associated pains.

What I mean to say is that we all know how easy one day can mess up your life. Everything can change in an instant and a new pain is a terrifying experience. We adapt quickly I think, us Crohnies, and one pain just becomes “another pain” at some point in the timeline of our medical lives. We bear up and carry on because it is generally accepted that that is what the healthy people do. We must be like them! We must continue to present a unites front on the hardships of life. Well, you know what, some days, I’ve just had enough of that united front and would like to tell those ignorant and selfish people exactly what is like to life in my body these days. It is not pretty.

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