I’ve had Crohn’s disease for over five years now and I think in all those years I have never ever been off the departments radar.
You know what I mean right? I’m always causing trouble.
If its not for being in hospital on their ward, I am taking biological medication and they discuss me in their weekly MGT meetings. Sooner or later I become unstable so I am then discussed because my case is complex and complicated; they discuss possible new ideas and plans for me. I imagine once I was a surgical candidate – the first time around! – I was discussed time and time again.
My point being, I am always on the case list for discussion; be in under Gastro or with Colorectal surgery. Heck, I’m probably discussed more than that, but even then, this is plenty.
So, for the first time in those five years of being a patient; for the time being at least, I am no longer going to be discussed. My Vedolizumab has finished, my surgery has been successful and my tests have come back normal and clear.
Why do I feel anxious then?
Because this is a new chapter for me. A new era. One I’ve never experienced before.
I will always be a patient. I am always going to have Crohn’s disease, and I will always have my ileostomy. I will always see the inside of the hospital. Just now, it won’t be for so many appointments, tests, check ups, infusions or admissions. I get to go away and get back to normality.
What is ‘normality’ after five years of being on the doctors radar? Of constantly being unwell and sick and incredibly ill?
What do I do now?
I guess, I get on with my life. What life, exactly?
I struggled to have a ‘life’ whilst fighting my Crohn’s disease; its chronic nature pushing me back two steps for every one I made going forward. I always tried to work – and work hard! – and volunteer my skills when I could. I maintained a relationship, improved my friendships, extended my circle of IBDers, built on my family ties. I tried my best to be a person who didn’t have an illness. But I had an illness and it was draining most of the time; I can see that now.
So now that my ostomy has saved my chronically ill butt from being so damn unwell so much of the time, what do I do now with all this?
The opportunities are vast and varied but they scare me more than the illness ever did. I grew up comfortably around my illness, letting it wash over me and define me to a degree. Let it build a skin, a shell around me. I felt comfortable ‘being sick’ because it was all I knew, all I was. Not anymore.
I still have an chronic illness but its no longer a problem. It’s all happened so quickly; and after the failure of my first surgery, I was sceptical that this one would work. But it has. It’s a curious thing, medicine.
I’m confused; when I should be feeling grateful that I have come out the other side so well. Comforted that things will only get better for me, when it’s all be so shit in the years that have past.