The Only Place You Ever Have To Live is in Your Body (Part Three)

The 22nd of February 2017, I began writing a journal when I returned to hospital to start my TPN treatment and the first thing I wrote was: “Milestones – 45kg, 50kg, 53kg). The magic number is 50 kilograms and we are off to the races. I was still eating and drinking sh*t until I returned to the hospital and this included multiple cans of coke per day, bacon sausages, sweets and hot dogs. How I loved them hots dogs but sweets, I couldn’t go a day with out eating something sour or sweet. Coke was full of caffeine and flaring up my crohn’s and the hotdogs were just processed bullsh*t which was not benefitting me in any way except satistying my taste buds. It was time for a change! My mum packed me two picnic basket full of food which ranged from sardines to prawns and the odd lemonade because I could not give up fizzy drinks. With Crohn’s disease your diet is limited but having a stoma, f*ck me, it wasn’t like I was I was spoilt for choice. Actually, the stoma diet contradicted a Crohn’s diet. With a stoma, you cannot eat raw vegetables but you are encouraged to marshmellows and jelly babies.

The three set hospital meals were not enough so I began eating five meals a day. When someone is going through a bad patch, the common phrase people say to you is “if there is anything I can do for you, then let me know”. Damn right there is something you can do for me and that is bring me food! When say food, I want anti-inflammatory and gut promoting foods. One friend in particular would cook me mackerel, sardines and prawns every single night and each morning he would come visit me in hospital to drop off the food. Oily fish is high in omega3 which have anti-inflammtory properties – more on this in a different blog. I came into hospital to put weight on but there was no f*cking way to warm my food as I was not allowed to use the staff microwave. Fortunately, I had my own room which I called the “bachelor pad” as I would give people the tour of my en-suite, bed, “gym area” (which was two 1kg dumbells on the floor) and my walk-in wardrobe which was my joggers thrown on a chair. I was missing the key part of my pad and that was a kitchen. A friend snuck in a hot plate for me to warm food and that was a life saver. I worked out what times that the nurses, doctors, cleaning staff would walk in, so I always had a window between 11.00am and 11.30am so I did not have to worry about being caught for cooking food. One day a housekeeper walked in and told me I am not allowed cooking equipment but I ignored him, does he not I’m a man on a mission to take control of my life again. Two days laters, some idiot set the fire alarm off and the housekeeper went straight to the nursing staff and blamed me the a**hole. Needless to say, I was told that someone had to take my hotplate away. But I kept it instead and my friend who was cooking me fish each day snuck in a big pink microwave which I hid in a cupboard and I continued to cook my food. Plus that fish f*cking stunk out the room so I always had the air freshner handy.

My weight was shooting up rapidly, so fast that the dieticians were worried that my weight was increasing at an alarming rate. I was encouraged to keep a food chart but because I was eating so much, I couldn’t fit it all on the sheet and after a week, the dieticians giggled and said, “you know what, it is pointless for you to keep this chart. The results speak for itself”. I only wanted to get weighed at the same time each day because I wanted my results to be consistent and that was after lunchtime, where I would have had three meals by this point. I was putting on almost 1kg per day, it was astounding and I was overjoyed. That was hugely down to the TPN which was pumping all my essential minerals and nutrients into a main artery, which included 1200 calories that was bypassing my stomach.

I was being fed into the PICC line (TPN) for 7 days straight, then it was reduced to 20 hours a day, 16, then 12. After one week of TPN, I went from 33.6kg to 37.4kg, that is over half a stone in just one week. I had an MRI scan that showed I still have active Crohn’s disease in 7 different areas within the jejenum and ileum.  Along with a stricture (narrowing of the bowel) that was 12cm from my stoma. When I thought things are back on track and I am hell bent on putting on the 16kg, I get told that my Crohn’s needs to be at bay aswell which to me was unrealistic as it has never been at bay for the 15 years I had it and now I know I have Crohn’s in 7 f*cking areas. It was advised that I begin Adalimubab injections which is an anti-inflammtory medication but I was strongly against it and have been for years because the side effects are two A4 sheets of paper long. I was forced into a corner and agreed as I want my Crohn’s to be settled, so I get have the reversal surgery and lead a better life.

As much as I wanted to go from 0 to 100, I had to take baby steps – literally. My target was to walk to the food court on the otherside of the hospital and back which was a 10 minute walk. I started with walking around the bachelor pad before I got exhausted, then after a week I would walk up and down the corridor of the ward. By now my quads and calves would be on fire because I spent the best part of 3 months sitting or laying down. Eventually, after 3 weeks I could walk to the food court at a slow pace but then I would rest before walking back. By week 4, I could walk the food court and back without a break – success! My legs would hurt for days just like the days of being doing heavy leg sessions in the gym.

By the 13th of March I reached 40kg (6 stone 2) and the first milestone of 45kg was within sight. Now I am stone heavier and no longer looking like a drug addict but more like a skinny rat. Since I was eating a strict diet which I will go into on a seperate blog, I know longer had the brain fog which I suffered from for years, my mind was so clear and I felt the happiest I have felt in a while, despite sitting in a hospital bed. I was filled with confidence and could talk for hours on end.

I feel alive again and want to home to continue my new diet. Someone must have been listening because I got told that they will train me to pump the TPN myself so I could go home and continue. I spent three weeks connecting/disconnecting and learning all the hygiene steps which did not needed to be dragged out for that long. One day I returned to my room to find that it was completed emptied – who raided my bachelor pad?! I was demoted to a ward with the other patients after 3 weeks of bliss but the worst thing is that the nurses found my microwave and hotplate! One month into my stay and I was granted ‘day leave’ as I was able to walk around and was active again so I got to enjoy the real world but the reality was I would have to come back to the hospital in the evening to be connected to the TPN and spend my nights there still. I was approached by a dietican who asked “do you have a spare room in your house that you can turn into a clinical room?”. A clinical room? What the f*ck, how much sh*t are you going to put my my house? Well, it turns out I needed a fridge, a sh*t load of cleaning supplies, medical equipment, ostomy bags and so on.

During my stay, daily blood tests, MRI scans and CT scans were the norm. That was until I got told I was going to a have fluroscopy which I didn’t think too much into. Well, I should have because went I went down they were like “right, you here for an enema”. “What?!” I replied. I did not want anything to be shoved up my a**, atleast take me on a date first. The radiographer goes okay so are you ready for your stoma enema? Stoma enema?! You want to shove a pipe into the my intenstine that is hanging out of my stomach? I pleaded for them to stick it my a** that seemed much more pleasant. Nonetheless, I allowed them to give me a stoma enema which to put it mildly, was horrendous.

20170320_201112(1)
Late March: The day I got to go home after 5 weeks in hospital at 43kg and my bowel has prolapsed by 2-3 inches

March 28th was the day I was looking forward to. Why? Because it was the day I get to go home after 5 long weeks which in hindsight doesn’t sound long but it felt like years. I was so excited to go home as now I feel fantastic, the TPN revitalised me, my diet has vastly improved and I felt like a new person. My final weigh in was 43.3kg (6 stone 8) which was a 10kg increase in 5 weeks which is unbelievable as I am past halfway of putting on 16kg so my train of thought was in another 5 weeks I could hit my target.

I would soon realise, I was wrong. Read Part Four to find out.

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