Monday 29 January 2018

GUEST BLOG by Emma on 'College and Chronic Illness'

College with dyslexia, ADHD and Autism is hard enough but when you add chronic illness onto that it can be unbearable at times. I rely on a feeding tube called a Jejunostomy to deliver a special formula into my jejunum in order to bypass my stomach. I also have a PEG (gastronomy) tube in my stomach to vent out my stomach bile as to prevent me constantly vomiting as the bile has nowhere else to go quick enough.

A Jejunostomy is a thin tube that goes through the abdomen and straight into your jejunum (part of your small intestine). I have this due to Gastroparesis or delayed gastric emptying which means my stomach doesn’t empty properly making me vomit when I eat food. With the jejunostomy, my stomach is bypassed and so I can still be fed and stay healthy! The PEG is a tube that goes straight into my stomach that I use to drain my stomach bile. From the Gastroparesis, the bile builds up in my stomach and if I don’t drain it can make me vomit. Previously, I had a PEGJ tube which is like a PEG but has a jejunal extension, so like two tubes in one! However, I had lots of problems with that tube and ended up very weak and put on TPN (Total Parenteral Nutrition). TPN is a formula that goes straight into your central vein via a central line in your neck, chest, upper arm or sometimes your groin. TPN is used as a last resort as it’s very dangerous as central lines can cause sepsis.

Dealing with my learning difficulties is really hard at times to keep up to date with assignments and write the notes up fast enough. Just to understand the context and conversations between students becomes some kind of a mind game. I have an obsession with Lego so I guess a way of explaining it is, I’m trying to build an understanding without; instructions, no base plate and not enough blue 2x2’s. This is all if I’m not distracted by the person in fronts fluffy coat that as hard as it is, I. Must. Not. Touch.

Being surrounded and offered food you can’t eat is a real awkward situation. You don’t want people thinking you’re on a diet or being rude but yet again, not want to wave your tube about and tell them that this is how you eat. Even I know that’s not how you make friends. After a few weeks of the start of term, the questions start coming; “why don’t you eat?” “what’s that tube for” “why do you carry that backpack everywhere?”. With me I went to all three tables and explained everything to them as to prevent repeatedly telling individuals over and over again. After that however, the support I’ve got is amazing and they haven’t treated me any different. If anything, they protect me from other people outside our class, supply teachers and help me to get to places as I have to carry two backpacks. One afternoon my PEG fell out and the student drove me to A&E to get it reinserted! Another time I was admitted to hospital for a week and they came and visit me! I don’t know how I would do college without my class mates. A few in my class work as HCAs in A&E and on wards; so recently I had an epileptic Tonic Clonic seizure in class and they knew exactly what to do! and I’m so grateful for them and their knowledge in that particular situation which could of been very dangerous for me. The paramedics were also pleased with their quick responses. One student has also caught me as I was passing out and on another occasion, sat with me while I was vomiting my guts up as my PEG got blocked and stopped draining.

Are class has become a very open place where Poo, wee, sex, farts, vomit, smelly stomas have all become so natural around us and it’s great and you can get off your mind that question of ‘if your poo last night looked normal’ or if not, ‘what should you do’ etc.. and it’s great!

College is exhausting, despite all the laughs. My body doesn’t always cooperate and I end up missing days due to extreme pain, nausea and seizures. My teachers and class mates understand and support me by taking notes for me so I don’t miss out which is so helpful! There’s a cupboard with a bed in it which is kind of meant to be a medical room but anyways I use it a lot when I’m too tired and need to lie down or have to administer my medication through my tube. All my class mates are fascinated by my tubes and some like to watch me do meds which I’m fine with as it raises awareness for when they all become great nurses!

The relationships I’ve made with these lovely ladies (and Sam) have made College so much easier for me mentally and physically, I wouldn’t still be on the course without them. They gave me loads of lolly pops on my birthday as lollies are one of the only food I can have, they voted me student of the month in October and they are some of the kindest people I’ve ever met. I’m glad to say that my conditions are not going to get in my way when it comes to my education as I have the best support network I could ask for and all the determination I can produce to succeed.

-Emma Shutts