I didn't want to say anything through fear of jinxing myself,however after speaking to the doctors this morning during ward round it seems the plans are moving forwards… we are making plans for my surgery to happen this Tuesday coming!! In March my stoma surgery was postponed, since then we've had a desperate few months going through the motions of...

A few Monday morning smiles because my potassium is finally within a normal and SAFE range!  220mmol of IV potassium infusions later and we can finally stop worrying and now monitor my bloods closely for any further drops.For anyone who's followed me for a while, you'll know I used to need infusion every week before starting TPN.  Two yea...

I've been like a flat battery the past few days so haven't been online much.  We're now on route to hospital as the potassium levels in my bloody were dangerously low, and magnesium levels high. I'll be admitted at QMC to have this addressed and hopefully treated, but it doesn't explain why I felt so awful! It's always upsetting to be rushed i...

I've grown up having people tell me I'm lazy, being told I need to get off my butt and crack on. But over the past few years, I really have learnt that rest isn't a luxury, we all need it. At one point, the idea of doing everything at 60mph and running on three hours of sleep was glamourised and made to look like the only way you can succeed. It mi...

I figured it wouldn't hurt to re introduce myself to get to know everyone here a bit better- especially since there's a few new people here...if you're one of those- welcome!  My name is Evie Olivia Toombes and I'm 18years old I have a few severe chronic illnesses (Spina Bifida, Gastroparesis, Pseudo obstruction, Cauda Equina Syndrome, Gilbert...

 After a bit of a wobble and a cry when I first arrived in hospital on Monday, today has been a much better day. I'm still not sure of the plan at all, so no updates on that front unfortunately- at the moment I'm waiting for a PICC line placement so that we can start some nutrition directly into my veins (known as parenteral nutrition/PN). I w...

 Bit of a crazy day today! Bags packed, brave face on and a pit stop to see the wonderful Daisy en route to say goodbye...we have a bed in Nottingham QMC 🏥 There's a long road ahead but it's so necessary to get the help and treatment I need, with the end goal to be strong enough to ride Daisy, visit more schools to encourage children to #FindA...

 These are the times I wish I was an octopus 🐙 ...can that be my #FindAWayNotAnExcuse idea today?😅🤷🏻‍♀️Today's events came a lot sooner that I'd thought they would. It's been over three years since I first began having regular infusions and blood tests, each time needing to take blood, cannulate and enter the veins with a needle once if not us...

 Feeling suitably grim and unfortunately with news to match!🙈🙁 Me, mum, the gastro Dr and the colorectal surgeon all met today during wardround to speak. Due to the current climate our NHS has been dropped into with little notice, and the top priority being minimising risks for all patients, the decision has been made to postpone my surgery un...

Feeling refreshed after a last minute trip out to Willow Banks with Daisy today- I'm due to be in hospital any day now, just waiting for that magic phone call to say there's a bed and we'll need to drop everything and go. It feels like we've been stood on our tiptoes the past week whilst trying to be ready, so some normality and fun was very welcom...

 It's been a bit of a tough few days trying to juggle various aspects of my health. Without dwelling on the negatives that we're still working through with the occasional tearful moment I wanted to share some good news (and hope I don't jinx myself!)😂🙈 I've been on PN for 7days now and for the first time in 10months I've GAINED weight!!🎉 It's ...

When I began PN last week so many people said 'you'll notice a huge boost in energy straight away' and 'you'll feel so much better' but I just wasn't getting it, in fact I felt worse than when I was home. The past week I've been sleeping 14+ hours a day and still struggling to keep my eyes open, walking and staying mobile has felt like such a chall...

 Feeling utterly terrified but also so grateful. A huge milestone passed as I've officially began Parenteral Nutrition since having my PICC line placed earlier this week. (The solution bag has to be kept under the red bag to protect it from daylight due to how sensitive it is.)Tonight I've managed to sneak away from my hospital room to the pat...