I developed Crohn’s Disease at the age of 11 after being diagnosed the day before the first day of High School. Now aged 27, it left me being unable to absorb the nutrients and minerals from my meals which resulted in me being only 5 foot 3 and being afraid to eat too much as I could not endure the pain that would follow. Despite this, I was living a normal life without any limitations, or so I thought. My six part story will tell you how I went from feeling like a zero to becoming a hero.
On Christmas Day (2016), I was spending the day with my family and looking forward to the Christmas lunch. Like most mornings, I woke up with pain in my stomach but I thought oh it’s just my Crohn’s flaring up which was no surprise considering I had a few drinks on Christmas Eve, but f*ck me the pain became sharper and more excruciating, to the point that I could not move or shout for help. I managed to reach for my phone and call my sister who was in the other room. She said shall I call an ambulance? Usually, I am like no I will be fine (because my remedy for everything is sleep it off). However, I needed serious help and I was rushed to A&E. Since I was given gas and air in the hope to ease the pain, it caused me to be sick which then meant I needed to be isolated in a hot and stuffy room with no windows for 12 hours. I was pumped with morphine, morphine and more morphine which did not even touch the sides as I was still in excruciating pain! They gave me an x-ray and a CT scan but yet they were unable to determine why I was in so much pain.
The next day I had surgeons, doctors, nurses, dieticians and IBD specialists all come visit me. All of which felt it was necessary to push my stomach and feel around and while I grit my teeth and try to hide the pain, it was obvious I was in alot of pain but I just wanted this all to end and go back home. Touching my abdomen with a very light fingertip had me on the verge of tears due to the shear pain. The truth is that the pain felt like someone shot me in the stomach and then poured battery acid on top for good measure. It turned out that the CT showed a small perforation in my bowel so they suggested that anti-biotics will heal the perforation. On top of all of this, I had an infection and my temperature was through the roof. I spent 5 days laying on my back being unable to move, I was not allowed to eat and I did not go to the toilet, so I began to deteriorate. After 2 days, my temperature was creeping higher and not coming down! So I decided to Google ways to reduce your body temperature and read that cold water on your feet helps. With the very little strength I had left, I managed to get out of the bed after 3 days and put my feet under the shower and I would sleep with the window wide open and feet hanging out of the bed. The room was so cold that the nurses who would come and check my temperature would walk back out and put a fleece on. Despite my efforts to trick my body, it never worked and I couldn’t go home.
The 5th day I spent laying on my back with no food and not needing to go to the toilet. A surgeon and his students came to visit that morning and informed me that it isn’t a small perforation but infact a “significant perforation” which caused my sh*t to pour into my body and resulted in the infection. I was presented with three options: an ileostomy bag, an ileostomy bag or an ileostomy bag. I was like no! I am not going to sh*t into a bag. They made it very clear that this is LIFE THREATENING and if you do not go through with this then you will have no options at all. I begged and pleaded for alternatives but throughout the day doctors, surgeons, nurses, dieticians, IBD specialists and my family all came to convince me to have the surgery. Everyone gave me a different view point to what to expect and what the long term result will be and after the 6th person came and I exhausted all my questions and woes, I finally said f*ck it and just do it, I value my life.
I woke up in a daze to discover I have an ileostomy bag which was full of green bile, a morphine mask on my face, a drain pipe that had been plugged into the side of my stomach, 30 staples down my stomach, along with canulas and catheter. It felt like I was chained to the bed. One foot of small intenstine was removed and a 6cm hole in my stomach was created where my intestine was pushed through to the surface (known as a stoma) and the other end which isn’t attached is looped and sits under my skin. I told my family to not tell anyone because I wanted to suffer in silence as I simply thought no one would give a sh*t that I am ill but rather I would be the talk of the town, like “oh have you heard that so and so is in hospital”, but no one would ever reach out or come to see me. However, I was very wrong, infact it was the complete opposite. The same day I had an overwhelming amount of family and friends visit me but I was in no fit state to see anyone and if anyone tried to hug me I would try and turn away or ask to not touch me. Even if anyone knocked the bed, it would cause me to flinch, which hurt tremendously.
I was in a ward with 5 other men who had similar procedures, except there were aged 60 to 80 and I was 26 years old. It felt like a living hell because I spent midnight of New Years thinking about why has this happened, what have I done, so on and so on, but also thinking my friends and family are at the gurdwara (Sikh Temple) or they are out partying and I am listening to a ward full of people all hopped up on morphine, whincing in pain and screaming. As the days went by, I just wanted to go home and recover but being 5’3, I have dropped from 7 stone 10 to 6 stone (I was never a heavy person). Now, I am weak, frail and left to learn to walk again as I could not walk no further than 3 steps.
I was determined and eager to regain control of my life! Each day, I tried to walk a little further, first I would walk around the bed, then walk to the door which was about 15 steps away, then walk to the end of the ward, then I would try and walk laps around the ward. Bare in my mind the other elder patients were watching me and saying I wish I could do that, as they remained bedbound and I used to look at the nurses and my visitors and wish I could do go live a normal life again just like them. Slowly, I didn’t need the morphine mask, the long drain pipe that was plugged into my stomach was removed, the catheter and canulas came out. However, I was discharging too much waste into the ileostomy bag and I was not allowed to leave until I was producing less than a litre per day. Eventually, the 30 staples were pulled out of my stomach one by one so now I am mentally ready to just sit on my sofa again and regain my weight. However, my stoma output was way too high so I had to stay in for another day, and another day until I decided well I want to go home so I changed the notes of my stoma output chart when no one was around so it equalled less than 1 litre and I finally got to go home on the 4th of January 2017 after 2 life changing weeks.