My lupus journey

Why an ileostomy? What even is that? 

“I L E O S T O M Y”

Whenever I used this word the majority of people would not understand what I was rambling on about. I had to give an explanation along with my diagnosis! I put it into simple terms ‘its a bag on my stomach’ and then they’d be like ‘ohhh!’ I still don’t think they understood what an ileostomy actually is. Well, obviously no one would really understand a condition unless they’ve been put through it. Let me explain it clearly without any sugar coating business. 60cm of my small intestine was removed by 2 abdominal operations and after each operation, I was left with an ileostomy which means my small intestine was not in continuity and the end of the intestine was sticking out through my abdomen, obviously not loosely. That would cause more issues! Because of this, I had to use a medical appliance called an ileostomy bag.

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My lupus journey

What is inside my pink rucksack?

When I was given an option of which colour rucksack I wanted, obviously I chose the pink coloured one over the navy blue and black colours. I also asked for some wheels with it.

Inside the rucksack, I was to place something called a Total Parenteral Nutrition (TPN) bag and my Micrel Mini Rythmic™ PN+ pump. I was put on this after I spent 3 months in hospital post-surgery suffering from high-output which was depleting me of vital electrolytes from my system. TPN was replacing them just about at that time along with additional IVs of magnesium and potassium. I was constantly eating. The reason behind this was that I had a newly re-fashioned (yes, this is a medical term) ileostomy after an emergency admission which was literally pouring like a tap!

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My lupus journey

Systemic lupus erythematosus (SLE) diagnosis while going through my GCSE’s and moving onto college

Rewind back to 2011. I actually typed this post up on the 14th of July 2011; ever since it has been sitting on my memory stick. And now I know what to do with it!

I was at my final year at secondary school which meant the most important exams were taking place. This is the time I started getting my external symptoms which made it terribly hard for me to pay attention and concentrate on these exams. And to top that off I was getting snide marks and whispers about the rash on my face. I didn’t let it bother me because I knew I’d never see these people again once I left school!

An average 16-year-old would probably not have been through how much I have been through over the period of 2-3 months in terms of health that too at a critical time in every 16-year-olds life. The symptoms I experienced were: extremely bad fever, nasty cough, joint pain. I would collapse because I didn’t eat anything, I was anemic (a blood disorder in people with SLE, it is the lack of red blood cells or the presence of red blood cells that do not have enough oxygen carrying capacity due to a deficiency in iron or vitamins).

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