I own it, it doesn’t own me

Blogging, something I’ve wanted to do for a very long time. I always thought what would I blog? What would I even think of sharing? Now I know…

Welcome to Guts, Giggles and More, my blog about living with Crohn’s disease, my life and its experiences and ‘more’! I hope to help raise awareness, educate, provide good ideas and my knowledge. Most importantly I’m here to do what I enjoy doing the most, writing. So here goes.

I had an eventful childhood, some parts were worse than others nevertheless I grew up a happy child. I did well in school, had great friends and enjoyed life. I started getting poorly at the age of 9 years old, the odd stomach ache would appear every couple of weeks and I had got mouth ulcers. At the age of 11, I was incredibly ill, I’d go to sleep straight after school, I wouldn’t eat anything, whatever I did eat I threw up straight away and the stomach aches were excruciating, they never went.
No one could find out what was wrong, doctors would pass it as indigestion. My cheek swelled up at one side, I’d have cuts on either side of my mouth and mouth ulcers – the dentist pulled out my tooth thinking it would solve the issue but that didn’t work. They referred me to the LGI Dental Hospital, they constantly took blood tests but even they couldn’t find anything. Eventually, I had lost so much weight my mum grew very concerned. She took me to my GP who took my weight and some information as to what’s happened recently. She then very quickly referred me to hospital.

So there I ended up at the Bradford Royal Infirmary, at this point I wasn’t aware as to what was going to happen. I remember getting to hospital and being in a room, the nurse came in and asked my mum some routine questions. I can’t remember how I passed my time in the hospital for a few days; all I remember was being hooked up to a drip machine for IV fluids and the heart rate monitor. Eventually, I was transported to the Leeds General Infirmary for a couple of days where I’d have a colonoscopy and endoscopy for some biopsies to be taken to see if anything could be found.

The next day, I had family members visit me and within the next couple of hours, I was transferred back to the BRI. That same night I was told I needed a nastro-gastric tube, also known as an NG tube – this was to feed me a formula which replaced nutrition and minerals that I wasn’t getting from lack of food. This was the first time I was told I couldn’t eat certain foods, in this instance it was foods high in fibre but I could try and eat some things. After a day of having the NG tube I really wanted nachos with cheese from the cinema and a raspberry Powerade, my mum actually brought me some.
I managed only a quarter of the nachos and a few minutes later I ended up being sick. A few days passed and my mum tried getting me to shower, I was so frail and weak I really didn’t want to put myself through that exhausting task but I knew I needed to.
My mum helped walk me to the shower room, luckily it was next to the nurses’ station because a few steps from my room resulted in me passing out. Moments later I woke up in my bed surrounded by all the doctors and nurses, as soon as I came around one of the nurses took my blood sugar and to be honest I don’t remember what happened after that. Eventually, I was put on an elemental diet – this consisted of me being fed a formula via the NG tube. My worst nightmare to this day!
I wasn’t allowed any food or drinks except water, sprite and Fox’s glacier mints. More time passed, more visitors visited and more procedures were done. Doctors prescribed multiple tablets. Unfortunately, I’ve been on a huge list of medication I don’t remember all the names – the names I do remember I will happily state.  I remember being on a medication where the tablet was quite large, I had difficulty swallowing it so the nurses would have to dissolve it with a tiny amount of water beforehand.  I remember a side effect of this was loss of hair, I was so shocked when clumps of my hair would come out! During this particular admission, I had moved rooms 3 times. I remember being moved to another room on the ward. I spent the majority of my time in this room. I can honestly say I wasn’t sure what was happening at this point. My two best friends were the drip stand and feed stand at this point. I’d had some form of entertainment from the play nurses who would come ask what I like doing, provide me with colouring, dot to dots, hemmer beads etc. Anyway, some time passed and finally one day I had a visit from one of the consultants I will never forget…

‘We’ve got your results from the colonoscopy and endoscopy’ he started with. I was relieved they had an answer, then came ‘they show you have got Crohn’s disease’. To be honest, at such a young age it didn’t register what he was saying. I’d never heard such a thing before. I was just like ‘okay, so what happens now’, I looked at my mum at that’s when I realised it’s actually serious. The words I heard after that was ‘it’s incurable, you’re going to have this for life but we can treat it. My mum had a tonne of questions but as the list was so long ago I can’t remember. Soon started treatment, now the hospital knew what they were dealing with they could determine what had the potential of helping as opposed to trial and error treatments.

They finally figured out the correct ratio of feed for my elemental diet and I was assigned a dietician, they also started me on a course of steroids. Blood tests were still taken weekly to monitor my inflammation levels, and IV fluids and vitamins continued. Soon the power of the steroids kicked in, I started gaining weight bit by bit, I slowly started feeling like I had more energy and the pain that was constant, began to slow down. A couple of weeks later I was moved to a bay so I had a bit of company with the other kids. I soon learnt how to set up my own feeds and test my NG tube though I was still on medication and all the IV medication. The steroids gave me a lot of energy; naturally, I thought I was better!

The day came when my 8 week elemental diet was up, I could start reintroducing foods again! I had to start from scratch, my first week I was only allowed clear soups, jelly, ice lollies and juice (squash). The jelly went down a treat! I couldn’t believe I was allowed to eat again after so long. After that, it was bland soft foods, boiled eggs, chicken, boiled potatoes with no skin etc. This was absolute bliss for me; however, I was limited to small portions which were more snack-sized and more often. The food groups built up as time went on, my food reintroduction happened at a very slow pace to monitor what my body could and couldn’t handle.  I like to think I’ve been lucky because I’ve never had a certain food completely disagree with me, well until now. After a few more weeks I was discharged. They put me on a medication which would hopefully keep my inflammation at bay. I went back to the ‘normal’ life of a teenager and started high school. I’d already missed 2 months thanks to spending a month and a half of it in hospital. Then I had to pick up the courage to start. Things went well for a short while.

Over the years I’ve been in and out of hospital several times. Most of the time I’d spend summer as an inpatient, which is quite upsetting. At the age of 13 and 15, I had a small bowel resection – this is where the majority of inflammation was cut out and the bowel was connected back together. My second resection was intense as I was at the lowest weight I’d ever been, around 24/25kg. I’d have PIC lines put in through my arm which was used for TPN to help me try to gain weight. The recovery periods were hard too. Morphine and Epidural were my best friends at that point. Most of my inflammation was in fact in my small bowel with a few patches of inflammation at the end of my large bowel. Steroids worked, in fact, they were great. But they only worked for a short amount of time. Soon after the flare would start again. I really genuinely struggled to keep my Crohn’s at bay.

A few years ago my parents decided to split up, my mum left my hometown and I ended up staying with a friend and her family as I was in year 11 and about to sit my GCSE’s. Life was great; I didn’t feel like I had many issues with my Crohn’s at all even though I was always cautious about it. I had a good portion of freedom so I got on with my life.

About a month or so later I started losing my appetite, I didn’t realise it was yet ANOTHER flare. I’d speak to my mum on the phone several times a week so she knew how I was feeling and she came to visit me one time. She saw I was ill but I pursued living with my friend and her family. It wasn’t until I became really ill that I decided it was best for me to join my mum in Harrogate. I went and stayed with her for a few days, fortunately for me it was when I had a hospital check-up. Somewhere in the process of me moving my care was transferred to Leeds General Infirmary where I was given a new consultant however he knew of me and my previous care due to my initial procedures that were previously done in the LGI.
Unsurprisingly I was admitted again, the usual elemental diet restarted and so did the steroids. Over the last few years from this time I had been on steroids countless times and the elemental diet, feeds and NG tube had become a second nature to me. I’d have requests of how many pillows I needed, which painkillers worked and which painkillers didn’t work. On the downside, I was still in year 11 meaning I had to sit my final maths GCSE in the hospital when I was well enough.
I was discharged by the time my results were ready for collection, by this time I had completely moved so I was living with my mum in Harrogate. I had looked at schools for Sixth form and college. I was due to start and Health and Social Care course at Harrogate College. I passed all 12 and a half of my GCSE’s, I was proud. Despite an awful battle I had completed and achieved great results considering everything I had been through.

A year into my course at college I fell ill again, I really struggled with the move and became depressed. All I wanted was to move back to Bradford (where I was born and raised) and be with my friends. This resulted in another flare, again the steroids came and so did the NG tube. By this time I was really fed up with my Crohn’s disease. Is this what I have to live with? I’d ask myself. I’m going to fast forward some time, as a result of my depression my mum and I ended up moving to Leeds where I was much happier. I attempted to join college again but was unable to due to the stress of the workload; I joined a temporary course where I made some great friends. For a short while, I enjoyed life!

It wasn’t until mid-2015 I really started struggling. I got inflammation in places I didn’t think could get inflamed (I’ll let you decide where that is). I couldn’t walk, I couldn’t sit, I couldn’t lay down without pain and a lot of it.
For months no GP, no nurse, no consultant could decide what the issue was. On top of this, I began to get psoriasis ALL over my body, dry spots that weren’t exactly itchy but they were spreading and fast. I lost weight dramatically. At this moment in time, I was on Humira the one of many meds I’ve been on– a treatment for my Crohn’s which caused psoriasis but it wasn’t a common side effect. I was referred to a dermatologist who was able to advise me what to do. He prescribed medication for my skin and creams for my inflammation in places I didn’t know inflammation could exist. My skin settled little by little, but nothing helped the inflamed skin and soreness.

Eventually, I was admitted, I physically couldn’t carry on. Consultants repeated to me that the only way to get rid of this was to have an operation again and form a permanent stoma. I was 19, my life would be over! Naturally, I was against this idea. I struggled daily, cried daily and lived with the worst pain I’ve ever experienced daily. I fought my fight as much as I could. I had a check-up in the IBD clinic with one of the surgeons. In this appointment, I was exhausted. Everyone knew it and so did I, I came to terms with the fact I couldn’t cope. They admitted me straight away, shortly after I admitted to having the surgery they wanted me to have.

Surprise surprise an NG was put down and a feed was started, luckily I was allowed to eat with this one. I was monitored daily via blood tests and an MRI scan was done. It showed severe inflammation which explained all my other symptoms. My consultant was shocked to see the ‘other’ inflamed issue I had. They’d never seen anything like it. A few weeks past, because of my loose stools the nurses wanted to test it. I told them it was because of my Crohn’s but they had to due to protocol. To my shock, it came back… C Diff positive.
C Diff is an infection in your large bowel. This is the last thing I needed. I was moved from a bay into an isolated room and awaited further tests. I spent Christmas of 2015 in the hospital though they let me go home for a few hours. They allowed me to go home on New Year’s Day too however my body stopped me.

On New Year’s Eve, I started passing pure blood and blood clots. I cried, I didn’t know what was happening to my body. This happened for three days, I was so scared. I had an emergency CT scan which showed the whole of my colon inflamed.  The surgeons and consultants had a meeting to discuss my care and needs. This was on 3rd January 2016, that evening one of the surgeons I had seen previously came to see me. They told me they were going to go ahead with the surgery given I had provided the consent. I asked when thinking I’d have a few weeks to get my head around it. He stated the surgery would take place on the morning of 7th January 2016. This news in itself was upsetting, I cried some more. I wasn’t ready to lose my life to Crohn’s that quick. I’d never had support until this point, I never knew much about ileostomy’s (stoma of the small bowel). I was lost. That night with the advice of a friend who also has Crohn’s I joined a few groups on Facebook called #GetYourBellyOut, #IBDSuperheroes and Support for Crohn’s and Colitis. I posted my issue and my concerns and the response and advice I got was overwhelming. Finally, there are others out there like me, I thought. They’ve gone through what I’m going through. They know my struggle.

The day of my surgery came and I was anxious about everything. The psychologist came to see me (she’d been visiting me throughout my whole admission to help me with my anxiety) her words reassured me to a sense. The anaesthetist came and kindly said my mum could come with me to the theatre until I was put to sleep. This morning was the hardest, my uncle and cousin came to support my mum whilst she waited for me to come around after surgery. I was so emotional on my way down to theatre.

I came round after my surgery in the recovery room, once I woke someone put stitches in my neck to secure my central line that was placed. I felt pain but from the moment I fully came round my thoughts were exactly as follows…

I own this, it doesn’t own me.

One thought on “I own it, it doesn’t own me

  1. Great blog Surakhsha!

    I really admire your courage, fighting spirit, determination to not let it own you and your willingness to share your experiences to help others.

    Keep up the good work!


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