Tubie Things No-one Ever Tells You
As soon as I knew i was getting a tube & having a complete lifestyle change I started researching. By the time the day came I thought I knew pretty much all I needed to know about this foreign object which was about to find itself attatched to my insides! But you see, until it actually placed and you are living with it you can't prepare, not really.
- Be prepared for boxes, so many boxes...feed, syringes, water, giving sets, dressings, random plastic things you dont really know what to do with. Once you have a tube fitted these boxes keep appearing at first its all good, but a year on I now have a whole garage of tube stuff! Where does it keep coming from & why do stocks never go down!?! Believe me I am using it ......honest!
- Yes you have a million and one boxes but you never seem to have enough syringes. They are either too big, too small or have the wrong endy bit. If you manage to find syringes, stockpile them........[This may be where problem 1 started]
- The beeping....beep beep beep..... You will feel like it's never ending. I can now hear it in my head my mum probably also hears it. There have been so many times both mum & me have yelled at my pump, we've been so close to throwing it out of the window. Eventually you will learn to pretend you can't hear it! Hiding it under the mattress may also work :D
- Gross medication....What gross medication? One of the joys of my tube is that I no longer have to taste any of my medication. It's one of the actual good things about the tube aside from the whole nutrition bit! Anti-sickness medication is actually absorbed, Piccolax can be taken & not tasted! It's the little things in life ;)
- Sadly being spontanious is no longer an option for me. Everything takes planning, precision & lots of bags! Going to stay at my boyfriend's for a few nights looks like I'm planning to stay with him for the rest of the year!! When going out for the day I have to make sure I have all my medication & enough sterile water.
- Medication & drug taking suddenly becomes a precise ordeal of tablet crushing & medication measuring & water flushes. Oh how I look back on the days where I could just swallow a tablet [Just remember when you feel down you can't taste the drugs!]
- Towels, Bedsheets, Duvet covers & Pyjamas! You will need them by the shed load. Feed, Medication & General Fluid seems to get everywhere! It does not matter how clean you plan on being or even if you try really hard, one of these liquids will find it's way to your fabric! My ceiling is also caked in meds and fluid from mum's over enthusiastic syringe pushes and air removal!
- You will feel hungry if you have a Jejunal tube. Simple. I can have all my feed but my stomach is still empty & my brain gets mad. There is medication that produces hormones to tell your brain to shut up about food!
- You will suddenly realise how food orientated the world is. January = Diet Food, Easter = Food, Summer Hols = Food on the beach & in the sun, Winter = Food by the fire & Nice warming food, Christmas & Thanksgiving = a f**k ton of food!!!
- As soon as your tube is fitted friends & family suddenly seem to think you are now made of glass. YOU ARE NOT!! You are the exact same person who was wheeled into surgery, you just have some new plumbing!
- Finally you will practically live at endoscopy! Seriously I know all the staff, the nurses & the receptionists. I know the drill & you will soon be able to answer all the questions before the nurse even asks you! A side effect of this will also be that you will probably become tolerant to sedation. I now have enough to bring down an elephant, and can still walk as soon as the tube change has finished.