In the Autumn of 2011, I spent hardly anytime online.
In fact, I spent several weeks on several occasions, battling my defunct body in the hospital.
I remember a lot of emotions from those weeks I spent in isolation, unsure of what was happening, what would happen and how I was going to cope with it all.
The smell of cannula plasters. The familiar sound of monitors going off. The drip of the IV into my veins. The tiny paper cups of tablets. The disinfectant on the floors, the smell of the cleaned bathrooms. Gloves and aprons, fresh from their dispensers. Handel, clean blankets and squeaky bedsheets.
Medical memories. Sometimes, medical dreams or haunted nightmares.
I have no words, no photos and hardly any information except discharge papers from 2011. For the most part, I like that fact. But in other ways, I wish I could process that quarter of the year better. It seems like such an abrupt stop of visualising things outside of my own mind, my own memories.
I sometimes wonder about if doing all that, has made things easier or harder.
I’ve had worse times, beyond that of my diagnosis, since then. I’ve got photos and works to help me remember. Does that make them more ‘horrific‘ or ‘harder‘ in comparison? Do my words and pictures add to its intensity? Or are they just a record?
I’ve had Crohn’s Disease for nine years now. Almost a decade.
It feels like nothing but also bears this enormous weight.
It’s ‘nothing’ comes when I think of all the years I’ve yet to have with it. But its weight comes from all the things that have happened and only in a decade of time! It is crazy. Crazy bad and crazy good.
Let’s go back to September 6th, 2011.
I sat on the hospital bed, on a ward not designed for my explosive diarrhoea. They suspect I have gastroenteritis but how can that be still the case after over three weeks? I was tired, empty but in pain. I had no idea what was going on. The antibiotics they send me home with last week weren’t working, I felt worse. And not in a ‘you just need to finish the course’ worse, I couldn’t eat or drink without needing to run to a bathroom. How could there be anything left inside of me?
A knock at my side room came, a doctor came in. “Can I bring in medical students to do your H&P?” sure, why not, I replied. Then I could get some peace and quiet.
After running through all my symptoms, there was a lengthy pause before the first student asked another question: “Could it be reproductive?” the doctor dismissed this with a reason, but I was too exhausted to know the finer details. Another student queried “have you lost any blood?” and I looked confused before saying, no, nothing from behind. He looked disheartened like that was going to be the clue to get him to a diagnosis.
The doctor went through all my symptoms again. I read his name tag: Consultant Gastroenterologist. I had a sinking feeling. He was getting to a climactic point when the only female student piped up and said “inflammatory bowel disease?” the doctor smiled and nodded.
“Louise, it’s likely you have Crohn’s Disease. I’ve ordered a scope to see where it is exactly. We’ll know more afterwards. Until then, rest.” and patted my hand.
The next day, I was prepped and readied for a Flexi-Sigmoidoscopy.
The Endoscopy Suite was clean, sterile and white. I remember so much pressure in my back and bottom, then pain. The scope went further and I held in a scream. It was unbelievably uncomfortable and I wanted it to be over. Thank goodness for the sedation. I was floating but in the room. I wanted answers. But most of all, I wanted to run and hide.
My diagnosis brings up alot of pain. Not only because it was a dang painful experience, but I’d also experience Crohn’s Disease, second hand, several years previously. My boyfriend at university has it. I watched him undergo emergency surgery to repair a bowel perforation one February night in 2008.
I remember the central line in his neck, I remember his 10-inch scar stapled together. I remember the sorrow of not being able to help when that was all I wanted to do. I remember the frustration as he forgot to take his medications and flared. I remember.
This year, my diagnosis day is haunting me with memories like this.
This year, I’ll be in the hospital recovering from surgery. This year I will be sucked back into my thoughts, private and personal. This is not something I shy away from. I let my memories take me back and then bring me to the present day.
I sit and wonder why my mind likes to do this and the only conclusion I can make is that it is trying to tell me something.
Do you have any questions or queries? Or just want to share your own experiences?