Chronically Me

Chapter One

"Welcome back, Clara," I heard the soft voice of a woman say. My eyes slowly fluttered open, adjusting to bright lights of the recovery room. Standing above me was a gentle faced middle age woman with greying hair. "How are you feeling?"

"Sick," I mumbled, squeezing my eyes shut and taking a deep breath. However, this just caused pain to rip through my abdomen. "Urgh" I groaned going to touch my abdomen, feeling for the bag that I knew would now be attached to my right side.

"That's completely normal after bowel surgery. That's why you have a tube going up your nose down into your stomach. It'll stop you vomiting," she explained. I gently lifted me hand up to my face and felt the tube that was taped securely in place. "You should have some water," she said holding a plastic cup with a straw to my mouth. I groggily leaned my head forward and took several gulps, before laying my head back on the pillow. Despite being under anaesthetic for approximately 6 hours, I felt exhausted.

The nurse then went on to explain what would happen over the next few days. The consultant would come visit within the next few hours and explain to me how the surgery had gone. I would then be moved onto a general surgery ward where I would only be allowed fluids for the next 24 hours as my bowel had likely gone to sleep during the surgery. I would then only be able to eat soft, digestible foods until I passed my first bowel movement, which would hopefully be within 48 hours. Once I passed my first stall the stoma nurse would then come talk to me about the different types of stoma bags and stoma care.

I was 14 years old when I was diagnosed with chronic inflammatory bowel disease, specifically ulcerative colitis. Its cause is relatively unknown, but it's thought to be an autoimmune disease where a malfunction in my immune system causes my antibodies to attack healthy tissue in my bowel, causing inflammation. Yes, that's right my bowel, my shit collector. I won't disgust you with too much detail, but symptoms of my disease included recurrent diarrhoea, blood and pus in my stall, tummy pains and sudden uncontrollable urges to go to the toilet. For me this also resulted in embarrassment and severe anxiety.

Before I was diagnosed, I'd been ill for several months and had become severely anaemic and weak. I'd been to the GP several times and was waiting for a referral to a Gastroenterologist, but that didn't happen quick enough. It was New Year's Eve when it all came to a head. My family and I had stayed in, rather than going to a party at a family friends house, as I was feeling too unwell. It was the middle of the night when I had a desperate sudden urge to use the loo. I jumped out of bed and the next thing I remember is laying on the floor, my head throbbing. That wasn't the first time I fainted in the night, but it was the first time I'd hurt myself as a result. I'd whacked my head on my bedside table and blood was gushing everywhere. I now know that my fainting episodes were caused by severe anaemia and a lack of red blood cells delivering oxygen to my brain.

My parents came running into my room, as they did every time I fainted in the middle of the night. My mum gasped when she saw the amount of blood gushing from my head. I was confused but managed to pull myself up onto my bed. My mum gave me a clean cloth and told me to hold it to my head. That was then when I realised, I was crying. I was worried that something was seriously wrong with me. My worst fear was that I had some form cancer, a fear I know I shared with my parents. My parents decided I needed to go to hospital, not just for my head, but also for whatever else was wrong with me.

The ambulance came and took me to the hospital. We spent three hours in A&E waiting to be admitted. At least while we waited, they cleaned and glued the gash on my head. Once I was admitted I spent 5 days on the children's ward. I was hooked up to an IV drip, given antibiotics and underwent hours of tests. Eventually, after an unpleasant exploratory colonoscopy (when they stick a camera up your bum), I was diagnosed with ulcerative colitis. I was prescribed many different medications. To begin with, they drastically improved my symptoms. However, after several months it flared up again and the decision was made to put me on immunosuppressors. Drugs which increase my risk of contracting certain illnesses, such as skin cancer. However, because of the part of my bowel that was affected the sudden uncontrollable urges never went away.

Over the years I was hospitalised several times and given so many different drugs. Finally, at the age of 21 it was decided that my bowel would be removed, and I'd have a stoma bag instead. A lovely bag that is connected to my intestine and collects my shit. Glamorous, I know.

The bag would allow me to do things that I'd been too anxious to do since I was diagnosed. I'd only travelled outside the UK once in the past seven years, and I ended up in hospital. The idea of travelling now caused me so much anxiety that even the thought of getting on a plane resulted in a panic attack.

I had never had a proper romantic relationship where I felt comfortable and loved. Due to embarrassment, fear of rejection and a lack of understanding towards my disease relationships often deteriorated quickly for me. A lot of people didn't understand what the big deal was, but in my head my disease made me feel undesirable, dirty and generally not good enough. I had one proper ex-boyfriend, Sam, but that relationship didn't end well.

I had also never drunk alcohol out of fear of triggering a flare up. A lot of people didn't understand this either. A guy I once dated called me a boring, stuck-up, prude. I mean, I had decided he was a prick the moment I met him, but his comment still hurt. I wished I could drink and have fun the way most people do, but I was far too aware of what it would trigger. I had reached rock bottom several times since I was diagnosed, and I would do anything in my power to avoid it.

The bag would hopefully give me my freedom and dignity back. I wouldn't constantly be worrying about triggering a flare up or where the nearest toilet was. Maybe I'd be able to travel and party with my friends. Although, due to several bad experiences with men I still believed that a real romantic relationship was off the table. Who would want to be with someone with a bag of shit attached to their abdomen after all? That was my biggest fear with regards to the surgery. If a guy couldn't love me without a stoma bag, how would one ever love me when I did.

However, that all changed when I met Harry.

I'd love some feedback on this idea and I'd be grateful for any comments!

Also a huge shout out to @sarah_madden01 for the amazing book cover!