Getting to see daylight was bliss after spending 2 weeks in hospital and being confined to a ward with no windows. I was in awe of the architecture of the buildings, smiling when I saw the leaves blow by and was happy to see the world again. On the way home, travelling through the “not as pleasant suburbs”, I was amazed by the hustle and bustle, eventhough these were parts that I previously perceived as normal but never paid attention to. Everything was such an eye opener and I came to realise how grateful I am for my life.
With Crohn’s disease, a poor appetite and weight loss are typical symptoms and they were always prevalent throughout my life, but for the first time I was always hungry and could never get full. I would eat, eat and eat some more with 6 to 7 meals a day and snack throughout, yet I was not able to gain an ounce of weight. One month has gone by and I’ve only been able to sleep a few hours a night and all I could do is sit on the sofa as I was too weak to walk. I was once an independent person and I was reduced to being unable to dress myself, cook or wash. I went weeks without brushing my teeth or washing myself as it was so exhausting. My eyes began to stick out and my cheek bones were visible which left me looking like a drug addict.
Living with an ileostomy bag was torture and I could not understand how people were living their lives with one. I would read about people travelling abroad or going to the pub with an ileostomy bag, yet I did not have the energy to change the channel on the TV. I would empty the bag 15 to 20 times aday. Just imagine taking a sh*t 20 times a day! It was basically the same thing. Any drink had to be baby sipped because it would instantly enter the bag and food would pass through within minutes. How was my food and drink reaching my intenstines so quickly? I wanted to recover as soon as possible because my goal was to be even better than ever so I can have surgery to reverse the ileostomy, where they reattach the intestines, but I was failing miserably. I had people telling me, why don’t you try and walk around? I would if I could, I am not sat here feeling sorry for myself. I am dreaming about being able to go for a stroll, swim, ride a bike, drive my car again.
A month and half went by and mentally I felt strong but physically I was reduced to a former shell of myself. I woke up one day and thought right, I am going to brush my teeth, shower and change my clothes. This was easier said than done. I took the very short trip to the bathroom and I turned the tap on and I am exhausted. I began to brush my teeth and I felt I was going to collapse but I persevered. I had no choice but to go to the closest bedroom and collapse onto a bed as I became lightheaded. Ten minutes later, I got back up and went to continue to brush my teeth. The whole process of my brushing my teeth and washing my face took 45 minutes because I had to keep stopping and lay on a bed for 10 to 15 minutes at a time. I didn’t even attempt to shower or change my clothes.
Worried that my blood pressure is low, I am dehyrated and deficient in a number of vitamins and minerals, I requested a blood test from my local GP. They were being very difficult as my family explained that I cannot physically visit the doctor’s surgery and need a doctor to come out but they were like “no, you must come into the clinic”. Needless to say, they were f*cking useless. After two attempts, a doctor came out to see me and he said that my blood pressure is low (thanks for stating the obvious dumbass). All I wanted was a blood test. It wasn’t until almost 2 months later that I received an appointment to see a dietician, then things started to progress. Now I am starting feel some hope and that things are moving forward. Two months prior, I weighed 48kg (7 Stone 10) and when I got weighed again I was 33.6kg! I was speechless and on the verge of tears – 33.6kg! That is just over 5 stone.
The ileostomy bag would fill up like a balloon every time which was around 20 times per day and every time I would empty it, I was losing my bodily fluids and salts. That bag would leak and burst frequently. I lost count of the amount of clothes I ruined, and the number of times the sofa had to be cleaned as it was covered in my sh*t. I haven’t washed in months yet I was covered in my own sh*t constantly, so all I could or my family do was wipe me down. Fainting and blackouts were a regular occurrence. I would collapse as my legs were no longer strong enough to keep my body upright and I would be left screaming for help. This became the norm. I could only sleep on my back which was awful as I could never sleep on my back before but the bag would fill up in my sleep. I would wake up in the night just covered in my own filth and it would be all over my bedsheets. There were many times where it happened multiple times per night. I couldn’t live like this anymore and I just prayed and wished that I became strong and healthy again. One night at around 4am, I went to empty my bag and as I was finished, and was about to close the flap of the bag, I blacked out, stumbled backwards and fell. I woke my family from the sound of the impact of my head hitting the tiled floor. They rushed out of bed and carried back into my room.
Two months have now passed and I have a hospital appointment – it was about time as they just left me to rot. As I sat with a surgeon, doctor and dietician, they informed me that if you lose 10% of your bodyweight then we become concerned, if you lose 20% then this is a red flag, but I had lost a staggering 27%. I lost almost 1/3 of my weight in two months. The only option was for me to be fed via a main artery where they place a PICC line into the side of your arm which then leads upto your chest – this is called total parenteral nutrition (TPN). I want to reverse my ileostomy, why can’t you do it?! Basically, my body was too weak so the intestines would fall apart, I was informed. Before they would even consider surgery is if I could get to 50kg! They expected me to go from 33.6kg (5 stone 2) to 50kg (8 stone) – this is was hugely ambitious and unrealistic as I only weighed 8 stone when I was working out in the gym. Then I paused and said you want me to put on 16kg (3 stone)? Challenge accepted!