Life with an Ostomy Bag: I Would Have Preferred Coal in my Stocking (Part One)

I developed Crohn’s 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 feet 3 inches tall, 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 the 25th of December 2016, better known as Christmas Day I was spending the day with my family and looking forward to the Christmas lunch. Like any morning, 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 while I waited to be seen. 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 I spent 12 hours in A&E.

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 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 was like oh, it isn’t a small perforation but infact a “significant perforation” which caused my sh*t to pour into my body which caused 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 have an ileostomy bag and 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, stoma 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.

Before
Early 2016: How I once looked at 8 stone

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 inserted 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.

Being 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 then 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. I was discharging too much waste into the ileostomy bag and I was not allowed to leave until I was produced 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 so it equalled less than 1 litre and finally got to go home on the 4th of January 2017 after 2 life changing weeks.

Read Part Two of my journey on becoming a brand new person and no longer living with the symptoms and pains of Crohn’s disease.

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For Every Dark Night, There is a Brighter Day (Part Six)

I acted as if the last 6 months were a minor blip in my life and had fresh haircut and shave, put on my nicest tweed suit on and went to both the weddings, after two days of leaving the hospital. I was happy to see my friends and they were happy to see me.

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Two days post surgery

One thing I haven’t discussed and that is diet. Diet has been the key factor in my recovery. Suffering with Crohn’s for most of my life became a walk in the park, sitting on the toilet 21 times in one day was normal because I would think oh my Crohn’s has flared up. I would eat food knowing I was going to suffer, but it was worth it for the taste. None of it was f*cking worth it when it perforated my f*cking bowel. Why was I playing with fire? I would eat fast food, processed food and sugary sh*te everyday. Almost everyday I would order food and rarely had anything homecooked. Eventhough I would weighlift, I would follow it up with a McDonalds. I loved burgers and Coca-cola as I would drink 2-3 cans per day. If it wasn’t coke, it was definitely something fizzy! Sweets! How I loved my sweets and I would eat them everyday. If I was hungry, I would eat sweets or I would drink a fizzy drink to trick my body to feel full because I was too lazy to make food. The only healthy thing I ate was the lettuce in my burgers, which is why it was no surprise I was frequently deficient in vitamins and minerals. There is no chance on God’s green earth I am going back into hospital so it was time for a drastic change.

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At 8 Stone

While been crippled and unable to walk, I would sit there and research food and nutrition. I wanted to educate myself as much as possible, where now I am at the point that I know what vitamins and minerals are in the food and drink I am consuming and how they benefit or affect my body. I spent alot of time preaching about diet and I still do because I cannot stress how important diet is, not only for your gut, but your brain, mood, sleep and other bodily functions.

Two weeks into my freedom and on the 9th of June, I went food shopping in the morning and came home to made a smoothie then suddenly my body started to shake uncontrollably. I was burning up and I could not control my arms and legs as they were shaking so vigorously it became painful. I was scared as no one was home to help and I could not reach for my phone or stand up. It would not stop, it was like my arms and legs were waving around like them inflatable tubes you see at used car dealerships, except my body was shaking in overdrive. Eventually I managed to call for help but my then it calmed down. A friend came over to help me and kept me company. I refused to go to the hospital, I was not going to go back! It wasn’t until my sister came home in the evening and felt my head and said “you have a temperature”. Then it was like a lightbulb when off and I said “sh*t, that only means one thing, that I have got an infection”. Now I am sh*tting myself as I thought my bowels have got infected following the surgery so I was left with no choice but to go to A&E.

I went to A&E around 6pm and as soon as they checked my temperature, it was sky high. This is what caused the uncontrollable shaking. There were three options in my head that this could have been: I have a normal infection, the PICC line is infected or my bowels are infected. I was hoping for option 1 or 2. I was given a bed at 3am so spent forever in A&E, typical but it was okay as there was an 80 year old woman abusing the staff that kept us all amused. The doctors ran tests as they thought the same 3 options as me. Well it turned out to be the f*cking PICC line that got infected. That was kept in just incase I got ill but it’s the thing that put me back in hospital. I suppose this was another blessing as it resulted in it being pulled. When they did, I didn’t realise how long it actually was, as it was around 1 foot because it was up my left arm, across my shoulder and down towards the heart.  I came out of hospital after a long weekend stay and all I could think about is that this 3 inch deep hole in my stomach should heal in 2 months so I can go back to the gym.

I turned 27 on the 7th of July and thought that I will go back to the gym on the 10th. My mind was and still is focussed 100% on diet and the gym. The magic number of 50kg that seemed to unattainable was finally reached! I am 8 stone. I put on 3 stone in the space of 5 months. I was training 5 times a week and weighing myself almost daily. I was still writing in the journal and I originally wrote 53kg as the pinnacle weight as this was the heaviest I ever reached before. September came around and I am 53kg! I felt lost because where do I go from here? F*ck it, now I am going for 57kg (9 stone) by October. I have never even come close to the weight before as I always hovered around 7.5 and 8 stone.

October has come around and my weight has skyrocketed from 53kg to 58.1kg (9 stone 1)! I went from 33.6kg (5 stone 2) in February and by October I reached 58.1kg (9 stone 1), I wasn’t far off from doubling my bodyweight in 8 months. As well as my lean weight gains, I have made strength gains too as I have reached a new personal best of 155kg deadlift and 170kg trapbar deadlift which in context to my size and weight is impressive.

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Healthy 9 stone

The hard work, focus and determination is paying off in a big way. The thoughts of what I endured and knowing it was life threatening has never escaped my mind as I think I about it daily but it’s the fuel for my fire that kept me going from strength to strength.

 

 

 

My Prayers Were Answered (Part Five)

It’s the 12th of May and I am sat on my bed looking around and thinking that the ward has seen better days. It was dusty, dingy and felt like it was where soliders from World War II came to. I spent the night praying that they reverse the ileostomy and put me back together. The next day, the surgeon and his team came to see me and was like “right, what shall we do with you?”, in which I responded, “well, my proximal end is already hanging with the distal end, it makes sense to put me back together”. His reply: “Yes, I can’t see why that can’t be a problem, let’s do that because it doesn’t make sense to have surgery to refashion the bowel then come back in a couple months to have the reversal”. I was so excited! Yes! They are going to put me back together. The first and last time I will be so happy to go under the knife. However, as I started the Adalimubab injections one month earlier, it wasn’t safe to do surgery as the injections were suppressing my immune system so it would be very difficult to heal from surgery. Since I only just started the injections, there was still a chance they would go ahead with the surgery. Plus my weight has dropped down from 47kg (7 stone 4) to 44.8kg (7 stone) so I haven’t reached that magical number of 50kg.

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May 9th 2017: Shortly before I discovered 6 inches of bowel dangling inside the bag

It was a waiting game but I was feeling positive and confident that they will confirm that everything will be fine and they will staple me back up. Two days went by without a confirmation and I am became agitated as I am fit and able bodied yet I am confined to a hospital bed twiddling my f*cking thumbs. The surgeon came late in the day and told me that we are going ahead with the reversal surgery. I was unbeliveably happy, I just started thinking of all things I can do again and that I can begin a super clean diet, go back to work, start weightlifting and no longer see my family and friends worry or be sad.

I spent five nights in the hospital only to be told that I am not high priority so we will give you an “elected spot” and call you back into hospital, so go home. Without saying “are you f*cking stupid, I am not going anywhere you useless pricks”, I was a bit more reserved with my reply. They agreed with me that it’s not fair to send me home, Fortunately 15 minutes later they returned and told me that we are going to perform surgery tomorrow. It was about f*cking time. I was basically begging for them to operate, just f*cking get on with it.

The next day, the surgeon that orginally came to see me when my bowel performated in December, came to see again. He sat down and goes “you look familar”. Then he remembered me as said “you were muscular, what’s the word I am looking for? Buff”. I smiled and said “that is a faded a memory now”. I used to admire bodybuilders and say I want a physique like that, but I never thought that I would be reduced to looking at old pictures of myself and say I want to look that. Another obstacle was thrown my way when the surgeon said we only operate when your protein levels are 30 and above and you have only just hit the 30 mark so it is risky. He explained the dangers and risks but ultimately said it is upto you if you want to go ahead. I happily said yes, let’s take the risk and operate. I fasted all day for the surgery for the second day now and couldn’t wait for the porter to come in with the wheelchair to take me to theatre. I was getting butterflies. That was until 10pm when they came to see me and apologised as they couldn’t operate. For f*cks sake, I am starving aswell so I texted my mum, and her and my sister came within 12 minutes. I was so hungry I just walked out and they took me to Nandos then dropped me back to the hospital after and I casually walked back in around 11.30pm.

It’s the 19th of May and I have spent a week doing f*ck all but being a patient patient. The hospital were giving a whole new meaning to the word ‘patient’. I made friends with my dietician from when I was in hospital prior for my TPN and she came to visit me to see how I was getting on and I just aired all my frustrations out on her. Within 30 seconds of her leaving, the porter came. Yes! final f*cking ly. I get taken down to theatre around 4pm and I woke up in the recovery room around 6pm to discover that my bowels were back on the inside, where they belong.

I remained in hospital for a further 6 days to recover and the pain was excruiating. Each day was getting worse and I was scared to eat. I had to sleep upright as it hurt to lay down. The surgeons always did the ward rounds each morning and he told me, you will know that your bowels are working when you have the “fart of truth”. This amused me and is still stuck in my head to this day. I have prayed for a lot of things in my time but I got to say this is the first time I prayed for a fart. The only advice I got told to help me let one rip, was to walk. This was easier said than done because it was painful to get off the bed, but each day I tried to walk outside. Walking didn’t help in the slightest and was left with a bloated stomach, looking like a pregnant woman and being in tremendous pain. The food I was eating felt like it was reaching the part where it used to go into a bag but getting confused and wouldn’t go any further. Needless to say, this led to me being sick on a few occasions and I was scared because I was tensing my stomach when I was sick and I was frightened that my bowels may detach. Despite all of this, my weight came back up to 47.6kg as I was still being fed by TPN everyday. I have been on TPN for 4 months by this point.

Wednesday the 24th of May and I could not sleep at all as the pain was unbearable then I was like wait I can feel air reaching the bottom half of my bowels so I gingerly went to the toilet. My prayers came through again and my bowels were working again. It was weird as I have sat on a toilet and used my a** in 6 months. The next morning I told the surgeon and he was like you skipped the “fart of truth” but you had the “poo of truth”. He said all being well, you can go home on Friday and stop the TPN plus two of my friends weddings were that weekend and I wanted to attend but I was like I am in no fit state to leave the house. Luckily, that night I had such a good sleep and a lot of the pain subsided.

Next day came and I am like I get to come off TPN and go home tomorrow! The surgeon goes you don’t need to stay, you can go home. I was like what?? Yes, see you later suckers, I am off. 4 months of TPN is over but the PICC line had to stay in my arm, just incase something happened post surgery. A friend picked me up and when I got home I had huge sense of relief and was so happy that I have my life back. I sat on the sofa no longer than half hour thinking I am so bored and I have alot of lost time to make up for so I jumped into my car went to meet my friends and acted like nothing ever happened and didn’t think about all the dehabilitating pain I was in all week.

It’s the weekend and I have the two weddings which I did not miss. No one really knew I was in hospital and they would have never known that I just left two days ago following my second major surgery.

The past 6 months was torture and it was finally over, or so I thought. Please read the final part.

A Blessing in Disguise (Part Four)

When I returned home, I did not have a spare room to turn into a “clinical room”, so my living room was turned into a clinical room. The sight was awful, I could not escape the hospital as the huge fridge that contained bags and bags of the TPN which was placed next to my TV. Boxes of ilestomy bags were stacked ontop of each other and I hated sitting in that room to see that this is now my life. Then again, sh*t happens. The first time I connected the TPN at home was upsetting to the least, but I got to place it in a rucksack and walk around the house so it wasn’t too bad. The sh*t thing was that I still had to be connected for 12 hours so I would have to come home in the evening to connect but all I would think is that the sooner I put the weight on the quicker I can stop and the can take this PICC line out of my arm and ultimately get my bowels stapled back together.

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Having TPN at home and walking around with it inside the rucksack

For some reason, when I cut out fizzy drinks completely, I turned to beer and spirits. Don’t ask me why. So I was drinking beer every day with my friends but to my surprise beer seemed to be fine for my stoma. I could only baby sip drinks still as they would go straight into my bag but for some reason the beer would not make its way back out so quickly. Infact, the beer must have been getting absorbed somewhere, plus my wee was crystal clear. Every day I would think about the day I can go back to the gym and regain my beautiful muscles. As you can imagine if a hole the size of a golf ball has been made through you abdomen to allow your intenstines through, it is not going to be very strong. So lifting weights was out of the question as there was a high risk of a hernia or the bowel being pushed out further through the skin.

I would go out and start living a normal life and most people didn’t know what was happening behind the scenes but there were many times when I was out  in public and thinking “what the f*ck is that smell? Oh, my bag has leaked under my top – great”. April 15th which was two weeks after being discharged from hospital I wanted to go on the Nagar Kirtan (Vaisakhi Walk) where Sikh’s walk from their local temples to other temples and meet in the city centre during the celebrations of Vaisakhi. The distance is approximately 3 miles each way. Bare in mind, two months earlier I could only take 20 steps before I became exhausted. I thought f*ck it, I am going to do it. I did the whole 6 miles and saw many people I have not seen in a long time and nobody knew a thing. I was so proud of myself because I thought if somebody told me in February that you will walk the full Vaisakhi Walk, my response would have been: “are you f*cking stupid?”.

I was told from the outset by the doctors that they would not consider the reversal surgery until December 2017 and that is based on me reaching and maintaining 50kg and that the Crohn’s disease must be in remission. It is early May and I am weighing 47kg so I am in the realms of my normal body weight, now 50kg was so close I could taste it. At the same time I couldn’t wait until December on a “consideration”. I was desperate for the surgery. A close friend kept telling to “write off this year and look forward to next year” but I was not going to write the year off and prove I can turn things around! I’m independant and feeling full of life, yet I am leading a limited life as I could not run, swim, cycle, travel long distances. I was scared to drive because if I got into an accident, the bowels would fly out of my stomach. There was a time I went shopping and I needed to keep emptying the bag so I went into a department store 3 times over the space of an hour and I could just see the security guard watching me and I was thinking, “will you let me just suffer in peace”. I had a feeling he was going come upto me once I returned from the toilets so I was going to take a detour but he was waiting for me and asked “what do you have under your top as you keep having your hand there?!”. So I lifted me top and said “I have an ileostomy bag so piss off and leave me alone”.

I had my diet all planned out for post surgery and I would pray every day for the surgery as it was holding me back from my goal of being a stronger, better and healthier person. To my surprise and disgust, a blessing in disguise was about to happen. On the 8th of May, I woke up and went to change my ileostomy bag like I would every morning to find that 6 inches of my bowel had fallen out of my stomach! It was dangling down and touching my groin. I was frightened and did not know what to do as I just stared out my bowel in shock. I called the Stoma Nurse who would regularly visit me but she was free until the 12th of May. I spent five days trying to manage the dangling bowel and it takes a lot for me to cringe or be disgusted but this had me on the verge of tears, seeing a bright red bowel which was swollen and purple at the end. The Stoma Nurse came around and instantly she looked worried and concerned which did not fill me with confidence. She needed a second opinion so she called the hospital and arranged for me to go in.

I went back into hospital for third time after only 6 weeks of freedom and prior to that I spent 5 weeks in the place. I spent 6 hours waiting to be seen by a surgeon who was wreckless and by wreckless I mean when I saw him he just was casually squeezing, moving and lifting up my bowels. I was just squirming around like a worm because it was like torture. He gave me three options: remove (the 6 inches that are dangling), refashion (have surgery to tuck it back into my stomach) or reverse (the surgery I have been praying for). They told me that I have to stay the night and will decide on the procedure tomorrow.

What surgery did they decide on? Read Part Five

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.

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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.

Reduced to Skin and Bones (Part Two)

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 life.

With Crohn’s disease, a poor appetite and weight loss are typical symptoms and they were always prevelant 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 am only 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 ilestomy 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 was 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 get better because my goal was to be normal again so I can have surgery to reverse the ileostomy, where they reattach the intenstines 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 swim, ride a bike, drive my car again.

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February 2017: Two months post surgery and left unrecognisable

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 perserved. 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.

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 I explained, as did my family 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 body 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 did was wipe me down. Fainting and blackouts were a regular occurence. 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 and leak. 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, I went to empty my bag and as I was finished, and was about to close the bottom of 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 ilestomy, why can’t you do it?! My body was too weak so the instenstines 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 16kg (3 stone) on? Challenge accepted!

How much weight did I put on and did I manage to swim and drive again which I was dreaming about? Read Part Three to find out.