My Latest Treatment!

 Hi all,

I thought I'd try my hand at blogging again, since I really quite enjoyed writing about my virtual cycle ride. So, I've dusted this old blog off! I thought I'd start off with an update on my Crohn's blog... If you haven't read my blog yet on my Crohn's/Colitis, you can read it here.

Back in June, I'd just started my latest treatment of Ustekinumab and Azathioprine. I'm now over 6 months into this new treatment and I realised I don't really know much about them.. So thought I'd talk you through them, and educate myself in the process. However, if you don't like needles though, I'd stop reading now!

Ustekinumab is an immunosuppressant - it reduces the immune system. It targets proteins in the body (interleukin-12 and interleukin-23) which are produced to help fight infections. Ustekinumab binds to these proteins and stops them from working, relieving inflammation and any symptoms.

The first dose of ustekinumab is given through an intravenous infusion (an couple of hours in the hospital MES department) and from then on, doses are given through self-injections. For my first injection, a nurse visited to show me how to do it. She brought practice syringes, demonstrated how to do it & then watched me do it for real. It was so against any natural instinct to stick this needle in my belly, but after the first time, it's been absolutely fine.

This is my little injection set up! Injection, sharps bin, a wipe & a pressure pad.

The drug gets delivered and I have to keep it in the fridge until I'm ready to inject. I prepare the injection site, squeeze some belly chub & the needle goes in at a 45 degree angle. I have to push the plunger in really slowly & then it's all over in about 30 seconds - for another 8 weeks that is!

Injecting! Look, it's me! ^

My second drug is Azathioprine - another immunosuppressant. Azathioprine can affect the way your body produces new blood cells, so I need to have regular blood tests to check everything is still dandy! They're pills I have to take every day, so a bit less scary than the needles! Using these two drugs together is a 'combination therapy', which will hopefully work a little better than my last drugs. They're doing their job so far, so we'll keep at them & see where we end up!

I hope you enjoyed reading this. If anyone has questions about Crohn's or IBD, I'm always very happy to talk about it! :)

Lots of love,

Katherine xxx

Crohn's, Colitis & My Story (so far)!

 Hi everyone,

I'm busy cycling across the channel and today I hit over half way across! So, whilst all I can see is the sea, I thought I'd take a chance to increase awareness and tell you all a little bit about Crohn's & Colitis and my (not very exciting) story.

So, Crohn's Disease and Ulcerative Colitis are both inflammatory bowel diseases (IBD). They can cause sores and inflammation in your gut. Crohn's Disease can affect your whole digestive tract - from your mouth to your anus! Ulcerative Colitis affects the large intestine. Your immune system starts attacking your body, and no one knows exactly why. Common symptoms include stomach aches, blood and mucus in your stools, urgency, diarrhoea, fatigue... It goes on and is different for everyone! They're both lifelong conditions, which means there isn't a cure and it'll always be part of your life - but there are lots of treatments that help ease it. Sometimes diet can sort it, sometimes medication and sometimes you need surgery. About 75% of people will have surgery to help with Crohn's Disease at some point in their life. Crohn's & Colitis UK have a wonderfully informative website if you want to know more!

I thought I'd also talk you through a little bit through my own experiences of the disease. I always find it strange talking about it because I don't feel like I've got it that bad. My symptoms have never been awful. I feel lucky so far!

Diagnosis

I've had bad stomach aches for years.. I'm really not sure how long it had all been brewing since before I went to my GP! In April 2016, Dan & I were on a camping holiday and had started to walk up Ingleborough! It soon became clear we weren't going any further than the cave because we were having to stop every 5 minutes for me to sit down as my stomach hurt so badly. This was the moment it dawned on me that I really needed to do something about it..

It's often called an 'invisible illness' because you can't see the impact it has.

These diseases are typically hard to diagnose. It was April when I first went to my GP and December when I was finally diagnosed. We went through lots of tests to get here and I was very grateful to my GP who listened each time I went back with no change in symptoms. I gave up dairy for two weeks and when that had no effect, my GP asked for a stool sample test. This was looking at my faecal calprotectin levels. <100 is considered a normal result, and mine was 600+! They asked for another sample to double check that...

Shoot forward to October and it was time for a colonoscopy so the consultant could have a look up there. The worst part by FAR was drinking the solution beforehand - the actual procedure was fascinating because I could see the screens and inside my own bowels! They took biopsies and the results came back negative. I was told it was probably a case of severe gastroenteritis... But they followed that up by an MRI scan, which indeed showed I had small bowel Crohn's! Waheey, diagnosis!!

Treatments

It feels weird to say they diagnosed it as severe because it doesn't feel severe to me when I read through some of the stories of other people with these diseases. They wanted to set me up on a biologic drug - which meant choosing between regular injections (Adalimumab) and regular infusions (Infliximab). Both these drugs work by reducing your immune system, which stops it from attacking your body. I opted for the first one as it didn't mean regular hospital visits. I learnt how to inject myself and it was all fine and dandy for a while. My symptoms eased and I felt normal again!

Humira injections!

Roll on August 2017... I injected my adalimumab (Humira) and my stomach blew up. Not literally, but it massively swelled. The nurses wanted to double check I was injecting correctly, so we gave it another 2 weeks and it did exactly the same. I sent my IBD nurses a photo this time and they immediately told me to stop taking it.

So, October 2017... I started on Infliximab instead. This is given by infusions at the hospital - and the first few took forever. It was a two hour infusion with a two hour wait so I was at the hospital for a good 5 hours each time. This slowly decreased and I managed to get down to 30 minute infusions without a wait - September 2018!

My first Infliximab infusion!

Early 2019, one of my blood tests came back showing I'd developed antibodies to the drug, meaning it wasn't working anymore. But, I didn't have any symptoms - so yay, I was officially in remission! They took me off all the drugs and I went about normal life again.

May 2019 and the stomach aches were back. This has always been my number one symptom. I get super tired too - but that just feels normal with my usual busy life, so it's hard to attribute it to the Crohn's... I went on steroids for a while until September 2019 when I started my next drug - Vedolizumab. This works in a similar way - by reducing my immune system. It worked for a while, but by December the stomach aches were back in full force... January, I got back in touch with the nurses and it was back on steroids for a while.

Vedolizumab infusion! I have to say, I quite enjoyed the infusions. Very relaxing and time to just stop.

It took months to get sorted this time as they wanted to send me for another MRI scan to check what was happening with my Crohn's. That was in March - just before COVID was quite in full swing.

A conversation with my consultant freaked me out, so I got in touch with one of my nurses and she calmed me down and explained everything to me. Apparently, my Crohn's is still nearly as bad as when I was first diagnosed, despite all of the treatments I've been on. She explained how with Crohn's disease, there are 4 things they worry about... 1) If it's in your small bowel (tick), 2) If you've got it in more than one area (tick), 3) If you haven't responded to treatments (tick) and 4) If you're young (tick). So, that's why we're going full pelt ahead with the immunosuppressant drugs and why I've had to isolate. Luckily, it only puts me in the highest risk category for the first six weeks whilst my body adjusts. After the 6 weeks are up, I fall down into the category below.

What happens now?

Ustekinumab is my latest drug, alongside another called Azathioprine. This is a combination therapy, and they're meant to help each other to work. The Azathioprine are tablets that I have to take every day. The ustekinumab started with an infusion and I'll have a nurse pop round every 8 weeks for an injection.

Ustekinumab, get in my system!

Fingers crossed they do work because who knows what will be around the corner otherwise!

If you've read to the end of this, I applaud you! It turned out a bit longer that I first thought... So thank you for taking the time to listen. I hope you found it interesting and I hope it helps to share awareness of these invisible illnesses.

Stay safe & stay home,

Katherine

xxx

Societies!

In my opinion, societies are the most important thing at university - besides the whole 'degree' thing of course...

When you're put into university accommodation, it's out of your control really who you live with. I'd say generally, it's those you live with who you tend to build your first bonds with. They're the first people you meet when you arrive and the people you tend to associate with most during Freshers' Week.

However, as your first week comes to a close you're faced with the amazing thing that is Freshers' Fair; go. Sign up to as many societies that take your fancy, make the most of every single freebie you can get your hands on!

Over the next couple of weeks, go to as many society events as possible and find your society. Most people will only settle with one or two societies in the end. At societies, you will meet people with much more similar interests to you - you'll share one interest over the actual society, but you'll find you have many more things in common too.

Personally, finding HP Muggle Society changed my university experience forever. Through the society,  I branched of the comfort of my own room and met so many people who are now some of my best friends. It allowed me to slowly infiltrate the floor above me (mwahaha) in my block (and I'd moved in there by the end of first term), and over the years it's increased my friendship circle massively.

HP Muggle Society 2014/2015

I’m so thankful for societies and for finally meeting people who like the same kind of things as me… I was getting so worried that I wouldn’t find anyone for ages, but I really hope we’ll all get on really well! We’ve got the sorting ceremony next Monday… I am excited. 

Societies also give you something to look forward to with their events, and by the end of the year, you may think about wanting to run for committee (something I'd definitely recommend!). Societies give you things to do outside of your lectures; they enriches your university experience in so many ways; they allow you to meet people you may not have necessarily met otherwise.

Katherine xox

Arriving at University & the madness that is Freshers' Week!

Nervous, excited, upset, happy? The different emotions flitting around your stomach just before you leave for university are like no other. You're probably about to be left in a strange city, surrounded by strangers, having left everything you've ever known behind. There may be emotional goodbyes and don't be worried about the tears because everyone is going to be in the same boat.

You may have found other people in your flat through social networks - we managed to find 11/12 of us beforehand, which was really lovely - or you may not have found anyone but what my main advice would be is to get out there and meet as many people as possible. Your flat/house are going to be the first people you meet, so go and get talking to them! There are most probably going to be awkward silences at first but everything will soon fall into place. You will find people who you click with eventually, so go out and meet as many people as possible...

So this is Freshers… day 1 is over with. Somehow I’ve got through it all without shedding a tear, although that may change if I think things over too much. It’s so lovely here – the accommodation is beautiful and the people are so lovely! Today’s been pretty mental. I woke up at 5:30, and then 6:00 when I couldn’t be bothered to go back to bed. :L But we drove up here, stopping at a farm house café in Newark for a glass of freshly squeezed orange juice & a slab of carrot cake! We got here, found our way to my block, unpacked a bit, Dad, Julie & Genevieve arrived, went out with them to some pub for a drink, came back, unpacked more and said bye bye! L I ventured into the kitchen to see the others who were there talking, then awkward silence, then talking. This continued until our trip to Cost Cutter – oh the joys. We returned, then walked up to some random Co-op on a walk we went on! We were all talking and getting on really well! :D This evening we all dressed up in our penguin onesies and the STYCs brought the top 2 flats down in our kitchen to play ‘Ring of Fire’ which was a bit bizarre. Luke rang me, and I went outside to see him and we walked down to Animal with his block! We sat on a bench and talked to people all night who were buzzing around (quite literally those who were dressed up as bees)! There was a girl called Charlotte from Luke’s flat, boys called Gino (he’s Mexican), Simon & James, a few random girls called Rafaela, Hannah, Emily & Lucy and Connor (who I’m friends with on Facebook because he’s doing maths)! I came back with them just after 12 and the others all returned about 10 minutes after I’d got back and made a hot chocolate. Now there’s lots of screaming and yelling coming from the kitchen (from the STYCs as well – ‘Can I lie on your bed?! I want to be a fresher!’). So yah… I’m curled up in my room, stuff everywhere, with a hot chocolate, which isn’t actually that hot because the microwave failed. Conclusion – we should get on okay in the day, but the evenings are a different matter at the moment… Why am I not a normal teenager? I just hope I’m not waking up to absolute madness in the kitchen tomorrow morning. 

So, that was my Day 1. My flat were brilliant, but I really struggled because I don't drink alcohol - clearly something that everyone else had in common. As the week went on, I receded  more (apart from Tuesday night, when I actually ventured out), stayed at home on Skype to my friends and family. One of my STYCs (second and third year contacts) suggested I went upstairs to join in with them because they weren't going out, yet I was too scared to go. Oh, how I regret this. Don't do what I did, don't hideaway because the first people you meet aren't exactly your kind of people - no matter how lovely they still are.

It doesn't feel like there's half the substance to this post that I wanted... Ah well.

Katherine

Packing for University.

You may have lived in the same house for over 18 years, so like me, you're going to have had gathered rather a lot of unnecessary clutter over the years. This makes deciding what to take away to university all the more tricky... Do you really need that t-shirt aged 12-13years? (Not going to lie, I found a few of these, and they did make it to York shamefully enough.)

When I was deciding what we needed to buy before I moved away, I scoured website after website for lists of things people recommended taking away. I found a massive list on The Student Room (I bookmarked it) here, and it's seriously been cut down since I last checked. At one point it was suggesting toastie makers, food processors and even 'traffic cone' make the list. Yeah, it was a bit extreme, but it's a rather helpful list so I'd definitely take note of that (except maybe coffee maker and rice cooker)! At the end of the day re. kitchen equipment, you know how good your culinary skills are and it'll be easy to judge how much equipment to bring dependent on that. Some people will cook full meals every night of the week, and others will live off take-aways, pot noodles and beans on toast!

Anyway, here are my top tips about things to bring to university:

1.  Photos/homely touches: when you arrive in your room, you will be faced with a blank canvas - an empty room in a strange city, miles away from home... I find it's the little things that remind me of home, and I believe they're so important when you first move away.
2. Pack the essentials so they're easily accessible: you're going to have a room filled with boxes of stuff and unpacking will not feel like your top priority when you have goodbyes to say, and the anticipation of meeting all your new flatmates. Make sure you've got the most important things somewhere you'll be able to find them.
3. Lamp: I know my university didn't provide one, but if you can't be bothered to get out of bed every night to switch your light off then a lamp it pretty essential.
4. Laundry Basket: yeah, no one likes dirty laundry all over the floor.
5. Hangers: another essential that may escape your brain.
6. Spare teaspoons: out of all the cutlery and crockery you will lose at university, I found teaspoons were always the ones that ran away the most.
7. A Facebook account: so this isn't exactly something physical, but if you don't have a Facebook account, I would thoroughly recommend setting one up. So many society events, socials and everything will be on Facebook - it makes it so much easier to stay in touch with everything that's happening, people to ask questions to and it will make life a lot easier.

(My room after Easter!)

I think that's about all I have to say for now - I'll let you know if I think of anything else! xxx

Results Day!

Results day can go one way or the other. You've been waiting so many months for the moment you step inside that hall, collect your envelope and find out whether or not all the hard work over the past two years has paid off...

However, many students will know whether they have succeeded in getting into their first choice of university beforehand through UCAS. On my A Level results day, I woke up at around 6am and there was no way I was getting back to sleep the way my stomach was curdling with nerves - to quote:

"Ergh, ergh, ergh! Why do this to me?! Why am I awake so early? I woke up at 6:10, and the thought of an hour and 50 minute wait until Track opens is scaring me so badly. I feel so sick, and tired. My stomach feels like I want to rip it out!"

To pass the time, I sat on my laptop talking to other students I'd met on Facebook groups who also wanted to get into York. It made me feel a lot better knowing that everybody else was just as nervous as I was! When Track finally loaded, a short while before 8am and I'd seen the 'conditional' offer turn to 'unconditional', I sat there in shock for a few moments, just trying to take in what had actually happened.

Mind you, when I opened the envelope full of my results I outright burst into tears on the spot with happiness!

"I was shaking so badly opening them, and Lizzie was next to me saying ‘oh my God, you’re shaking’ as I read my results. That moment, it’s the best feeling in the world. –cue tears-. Why is that always my first reaction to anything?! The tears started pouring out and Jackie saw me so she came over, gave me a hug, sat me down and said ‘Never, ever doubt yourself…’."

Everybody, take Jackie's advice. Now. 

It might not actually settle in for a while either:

"It still doesn’t all feel very real. It hasn’t really sunken in yet, the results anyway. I’ve fully accepted the brilliant news that I’m heading off to York for University! It’s still quite strange to think about – the idea of going away to University… the idea that we’ve walked into school together for the last ever time now." 

You may achieve the grades you need for your first choice, but you might also fall just short. Nevertheless, you should be incredibly proud of what you achieve and even if things are looking somewhat bleak at the time, they'll work out best in the end. I know a few people who didn't quite make the grades they'd hoped for, but every single one of them has achieved so much since, be it in a full-time job, or further education in a different direction.

Either way, here are my top tips for results day:

1. It sounds so very cliché, but get an early night the night before - have a good meal, take a bath, read a book! Undoubtably, you will be up early checking results and up late in the night celebrating too - that, or drowning your sorrows!
2. Remember that everyone will be biting their nails too; you will not be alone! Talk it through with others who are going through the same nerves and it will relax you.
3. Don't compare your results to everyone else's. If you've done your very best, then that's all you could have done and you should be incredibly proud of that. The only thing you're competing with is your expectations.
4. Be proud of how much your hard work has paid off - if you've worked hard, you will be rewarded! Ensure you celebrate with your friends and enjoy that massive weight that's been lifted from your shoulders!

I hope this has been vaguely interesting/helpful in some shape, way or form! All that's left for me to say about Results Day is GOOD LUCK! <3

Katherine xxx