I stepped out of my mums car and I could feel the pain in my ankles and knees immediately. I only had to cross a road to get to the doors of A&E, but it felt like crossing a mountain. The pain was intense, everywhere. It was such a strong feeling of pain throughout my whole body that I was glad my mum had given me a sick bag. Of course A&E was packed. So many people left the waiting area feel stuffy and smelling of sweat. Not a good combo if you are already feeling sick to your stomach. I sat with my head against my mums shoulder, praying that I would be seen by a doctor soon. The whole time I tried not to look at her face because I knew she was trying hard to keep herself together for my sake. I didn’t want her to see how scared I was, I wanted her to tell everyone how brave I had been even if I knew it was far from the truth. Eventually my bloods were taken and after an hour or so of sitting in the waiting area again, I was brought to Majors and I was given a bed to lie on. It felt amazing to lie down, to relax the pains in all my joints. But my joy was short-lived when another severe cramp hit. I just wanted to know what was going on with my body, why was I so ill? Why did I have to suffer like this, why me? Doctors and nurses approached, poked and prodded at me but all I remember now is a sea of blurred faces. I can vaguely remember having a cannula inserted but the vision comes and goes. To be honest, I remember little about that night, so much was going on around me. I do remember a doctor feeling like I would be better off with emergency surgery as they seemed to know almost straightaway from my symptoms and history that it was bowel-related. I remember my mum not being too happy with this as she felt I should be given the chance to try infusions etc. My bloods were terrible, and the more I heard doctors and nurses talk about how bad they were, the more frightened I became. I have to commend the doctors and nurses that night as they were so professional and caring, but my guardian angel of a mother was my lifeline. She calmed me when I was frightened, and wiped the tears when I cried. Never in my life had I realised how much I needed my mum until that night. Eventually I was sent to a ward and given morphine so I would be able to finally get a good nights sleep.
Within a few days, I was sent for a flex-scope to see into my bowels and then I was able to get more details on what my body was going through. They said my large bowel was very ulcerated, I was malnourished, I had malnutrition and the pain in my joints was due to inflammation. All in all, they diagnosed me with IBD – Inflammatory Bowel Disease. At this point, they were veering more towards an Ulcerative Colitis diagnosis but they could not fully rule out Crohns disease. I was seen by an IBD nurse and a dietician, both who were extremely helpful. The dietician started me on around 5 Fortijuice drinks a day. These are very high calorie drinks to help you gain weight, as I was under 8 stone and very weak. I was told I would have to have an NG tube inserted because I was so weak and malnourished, and after mum explained to me what it was I was petrified. My mum held my head still so I wouldn’t throw my head back and a nurse inserted a tube up my nose and down the back of my throat into my stomach. It wasn’t really painful but it was quite traumatising, the feeling of it travelling down. Because it has a small metal rod inside the flexible tube to ensure it goes down easier, it was very painful against the top of my nose and down my throat as it was very stiff with the metal inside. A few hours later I was taken down to have an x-ray so they could be sure that the tube was in my stomach and then the metal was pulled out, leaving just the flexible tubing in which was more comfortable. I then had my feed administered, which is a liquid feed with all your vitamins and nourishments in it. I did not eat proper food with this which was a relief because I hadn’t been able to eat proper food in quite a while. The IBD nurse explained to me what IBD was, and the treatments used. Because I struggled to wean off steroids, they decided that they would try an infusion called Infliximab. I didn’t have high hopes as I wondered how I would absorb it if I had malabsorption. Sure enough, the Infliximab was ineffective. This was when I met my new Consultant. I am not going to name him in this blog as I want to protect peoples identities, but what I can say is he is such an intelligent man and a fantastic surgeon. From the moment I met him, my gut instinct was to trust him. He explained to me that I was not responding to other treatments as my body was in such a bad way, and that the next and only option left would be surgery. A subtotal Colectomy with an end ileostomy. I was so confused, I didn’t even know what that meant, and I had never entertained the idea that I could possibly need surgery. He told me it was quite a big surgery and that he would remove the majority of my colon, but leave me my sigmoid colon and my rectum. Unfortunately that would mean I would have a stoma bag. I had to ask for my own peace of mind what would happen if I refused the surgery, and I was told that because I had malnutrition and malabsorption I should then expect the worst. I knew what he meant by that and reluctantly agreed to have the surgery a few days later.
On the morning of my surgery I was a bag of nerves. I had never had a huge surgery like this before. Yeah I have had a few small procedures in Day Surgery but never anything like this. I was torn between sadness at having to get used to life with a stoma bag, but excitement at the prospect of feeling well and being able to eat again. I hadn’t eaten a proper meal in at least 6 weeks and I couldn’t remember what enjoying food felt like. Anytime I had eaten in the last year or so I had to endure cramps and pains. The stoma nurse had marked my stomach with an ‘x’ where my stoma would be and I couldn’t stop looking at it wondering what it would look like with a bag attached. The only positive thing was that it would at least cover my horrible tattoo mistake from 7 years before! I was wheeled to theatre and my mum was beside me the whole way, and of course I was more calm and relaxed than her. I was thinking she needed anaesthetic more than I did! She reluctantly left me when all my details were double checked, and I was wheeled into the sterile white room where I would lose a part of me. There was no messing around, the anaesthetic was inserted into my cannula and I prepared myself to drift off to sleep, knowing that when I woke up my life wouldn’t be the same. I had to blink back tears at this because it is a horrible feeling knowing that a part of your body is being removed and you are never going to get it back. I didn’t have to think about this for long as the drugs took effect and everything went black.
Thank you for reading this, as it was quite difficult for me to dredge up some of these memories that I’ve tried so hard to repress for the last year! I hope you have found this interesting and will be back for part 2.