My First Experience of Infliximab

Good evening!

We’re officially two weeks into 2018 – have you managed to stick to your New Years’ resolution?

At the beginning of the year, I wrote that my resolution was to stay optimistic, positive and strong despite my ulcerative colitis. When I wrote that, I was already struggling with my emotions regarding another year of illness and pain where medication didn’t seem to be helping. Although my symptoms were nowhere near as bad as they were in March/April/May or September (which were definitely the worst months of 2017 for me, health-wise), I felt that I’d hit an emotional low. Everyone around me was ready for a new start (‘New Year, new me‘ and the like), and I was desperately hoping that I’d be miraculously well just because the number on the end of the year had changed – I put far too much pressure on this.

However, I’ve had a great weekend. Yesterday, I walked 8.5 miles, went shopping, went to the cinema and I ate out at night (11pm!). Although I’m super tired today, I’m happy that my quality of life seems to be improving again.

I’m not sure what’s caused this improvement or how long it will last, but I believe it may have something to do with the new treatment I started on Thursday: Infliximab biological infusions. A combination of this new drug, steroids and an improved attitude seem to be paving the way for a happier me – even though I still have a huge moon head (and really bad skin all of a sudden; what’s that about?).

I thought I’d share my first experience of this drug as I would have liked to have known more about what to expect before my first appointment. I left work at lunch time as I had decided to take half a day’s holiday for it – too ill to use it for a regular holiday anyway, so I might as well get paid to go to the hospital! Sam picked me up and we went for lunch before heading to the hospital. Once we’d parked up at the hospital, we made our way up to P1 ward, which was the second to top floor! The view was incredible.

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I’d not received a letter from the hospital, but I know my hospital number by heart at this point so I was prepared to tell reception who I was and why I was there. Laura, the nurse in charge, set me up with a fantastic view of the city (see above). She took my blood pressure, temperature etc. and then attempted to find a vein. I have terrible veins. They’re always a nightmare when it comes to taking blood. But, she managed to find a pretty decent one in my wrist for the cannula. First, she took two pots of blood, then flushed the cannula with saline solution (brrr, cold). I was then given IV steroids through it, before being hooked up to the Infliximab drip.

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Laura told me she would start the rate of the infusion off slowly to begin with to see how I reacted to the Infliximab. I was to tell her if I began to feel nauseous or if I got a headache. Luckily, I had no adverse reaction to this and soon enough the infusion was at full speed. Because of this ‘trial’ period at the beginning, the whole infusion took just over two hours. My blood pressure, temperature, heart rate and such were monitored throughout.

A nurse once told me that if you drink a lot of water before having a blood test, your veins are easier to find. I’d gone a bit overboard on this advice and, about 20 minutes into the infusion, I really needed to use the toilet! This was not an issue at all, as I could transport roll the infusion around with me to the toilets on the ward. However, I would recommend wearing something that’s easy to remove/put back on again with one hand as the cannula had rendered one of my hands pretty much useless. I was wearing tights. Whoops. Next time, I think I’ll take leggings to change into beforehand.

The day after my infusion, I felt rubbish. This may have been a coincidence, but I had a really rough time of it. I didn’t sleep well (probably because of all the steroids), and whenever I have a bad night’s sleep, my symptoms are exaggerated. How I managed the commute to work, I don’t know! I had bad stomach ache, frequency, urgency, painful movements, headache and fatigue – a killer combo. Still, the show must go on.

However, when I woke up yesterday morning, I was so surprised that I wasn’t in pain. I had absolutely no movements yesterday, which I initially found concerning, but I definitely took advantage of this by making the most of the day. Today has been very similar, with very little pain, although I have been very tired (due to my adventures yesterday and the late night). I’m hoping that this improvement in my symptoms is because of the Infliximab and that I will continue to get better. My next appointment is at the end of the month, but I will be seeing my consultant in clinic for a catch up this coming week.

Fingers crossed, this is the drug for me!

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New year, new treatment plan

Happy New Year!

I, for one, am very excited to welcome in 2018, as I know I will not be looking back fondly on 2017. Around 360 days ago, I became extremely ill – vomiting, diarrhoea, utter exhausation, and abdominal pain so bad that I found myself shivering in cold sweat. Followed by a year of doctor’s appointments, embarrassing public accidents (luckily, the majority of these were ‘near misses’ – but still, what 22 year old girl wants to be sh*tting themselves in public?), cancelled plans, a hospital stay and so many different drugs and their side effects; all in all, not exactly the best year of my life.

But, when all is said and done, I’m still here and I’m still hopeful for my future. If I can get through an entire year of agony, then I can keep pushing on to find a way to control it. I’m back on the steroids again (fourth time lucky?) and am about to begin Infleximab infusion treatment (Inflectra).

Immune systems, when they work that is, are great things. When you get ill, your body produces a protein called tumour necrosis factor (TNF) which is responsible for inflammation. This inflammation is great for fighting infections, but only if it’s temporary. However, in Crohn’s and Colitis patients, it is thought that there is an over-production of this protein which causes chronic inflammation, leading to all sorts of nasty things like ulcers and damage (not so good!). Infleximab is a biological drug that works by targeting this protein to reduce the symptoms of inflammatory bowel disease. I will hopefully be starting this treatment within the next couple of weeks. This will consist of 2 hours on an IV drip at 0 weeks, 2 weeks, 4 weeks and then once every 8 weeks. I’m really hoping that biological drugs work because I have not really responded to oral medication, and I’m so fed up of steroids!

Have you found success with biological treatment for IBD? Or, do you have any tips for passing time during an infusion?

Here’s hoping for a wonderful, healthy, pain-free 2018.

My Day Out at The Allergy and Free From Show North

Good afternoon!

Over the weekend, me and Sam went to Liverpool. This was my first time in Liverpool and I was pleasantly surprised with the city – Albert Docks, especially, was lovely; I wish we could do something like that here in Sheffield!

As fun as sightseeing and museum-hopping was, our main reason for visiting Liverpool was the Allergy and Free From Show North. As a newly(ish) diagnosed Coeliac, I had a great time trying out lots of free-from goodies and the experience has really helped me decide what products I’d like to purchase in the future. I also (finally) signed up for Coeliac UK, which I’ve been meaning to do for months! It was only £12, which is half the usual sign-up price, so it was a great opportunity to do this, and I was almost glad I waited so long to sign up! Here’s me posing with my Coeliac UK canvas bag:

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We arrived about 12:30pm and the place was already heaving at this point. We decided to have a wander around and try a few things before finding something to eat for lunch. After doing a round of the stalls, and grabbing a free swag bag, we decided to join the mammoth queue for gluten free fish and chips. The stall offering this rare treat was Middleton Foods – not a company I’d heard of before, but easily one of the busiest stalls!

In the swag bag, there was some Schar bread, free from chocolate spread, cactus water, Lucozade, and all sorts of different goodies and vouchers! As the show itself was a free event, this was really unexpected!

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On a second round of the stalls, I began to purchase some of the products. Taking advantage of their 2 for £3 offer, I bought some batter mixes from Isabel’s stall (see picture below), I also bought a box of goodies from the Nakd stall (the lovely stall assistant put me some extra bits in for free) and, as previously mentioned, I made sure to sign up for Coeliac UK. I would have bought some bread from Juvela or Genius, but I am overrun with the stuff at home at the moment – my freezers are chockfull of gluten free bread! I tried some gluten free beer (even though I shouldn’t drink while I’m on pred, whoops! It was only a sample size 😉) and I may have considered buying some if I could actually drink.

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Although Schar is one of the main names behind the show, I didn’t find many of their products to buy. However, they were offering gluten free waffles and sausage sandwiches, and the queues were rather large for both of those.

We left around 4, which was closing time, and by then it had quietened down significantly. On our way back to the hotel, we popped in the Museum of Liverpool, but as it was late we were kicked out quite soon after!

For dinner, we went to Lunya, a tapas restaurant with an extraordinary amount of cheese on the menu! The majority of their dishes were gluten free and they seemed very aware of issues surrounding cross-contamination. Also, their albondigas were so yummy! I would recommend them to any Coeliacs visiting Liverpool.

Overall, I had a fantastic weekend and I’ve not got lots of gluten free goodies to keep me going for a while! I can’t wait to go back again next year! 😊

Let’s Talk About Pred

Prednisolone is a type of corticosteroid (not anabolic steroids that are used to boost sports performance!) used to reduce inflammation and subdue the immune system of Ulcerative Colitis patients. It’s fast-acting and strong, but should not be used as a long-term treatment – it is usually used to attempt to get the patient into remission.

I first started taking Predisolone in the middle of May of this year. I started on a dose of 40mg (8 x 5mg tablets a day) for two weeks, then I was told to taper down my dose every week by 5mg. Although they helped my colitis symptoms initially, I never really got to a point where I wasn’t in pain and I was still having frequent bowel movements. However, I was sleeping through the night again, which, by this point, I hadn’t been able to do in over 5 months.

Once I had gotten down to 20mg a day, my symptoms came back. I told my consultant, who then put me back up to 30mg. All went reasonably well and at the end of August, I finished my course of steroids. However, a week later I was so ill – I couldn’t leave the house due to urgency! This was when I ended up being admitted to hospital – an experience you can read about here – I was dependant on steroids.

I was then given IV steroids for 5 days in hospital and was monitored. Once I was well enough to leave hospital, I found myself right back at square one – 40mg per day of prednisolone, with the same plan to taper down after two weeks. I’m currently on 25mg per day – I have my fingers crossed that I’ll eventually be able to come off them for good!

After 5 months of a drug that should only be taken for 8-or-so weeks, it can be said that I have developed a love-hate relationship with prednisolone.

Firstly, there’s the good – where have my BMs gone? Just like pre-IBD, I’m going once a day and I can almost pretend to be a normal person. There’s still some urgency, but nothing like before.

That’s where the positives tend to end… prednisolone does what it’s supposed to, but the side effects are not always fun. Like my BMs, my ability to sleep has also disappeared – what is sleep? I’ve forgotten. My eyes are red and puffy, my face has swelled like a balloon (pred-head, anyone?), my skin is dry, my hair is falling out, I can’t concentrate, my face is getting oily and spotty, I want to eat everything in sight and my mood is up, down and all around!

5 more weeks. Just 5 more weeks. If I repeat that it doesn’t sound too bad – nothing like the months of pain and running to the loo with the colitis. Hopefully my body will last more than a week off of them this time! 😊

What are some of your least favourite pred symptoms?

My Top 5 Gluten-free Menus at UK Chain Restaurants

Food is social. I can’t remember the last time I went out with my friends and it wasn’t for something to eat. Since my coeliac diagnosis, my friends have refused to pick somewhere to go for food – not that we were ever good at picking places to go before – and they now use my disease as an excuse to make me decide for the group. There have been some successful (and some less successful) restaurant experiences over the past few months, and I’d now like to share some of the better ones with you.

 

  1. Wagamama

I love Asian food. Due to coeliac disease, Asian food does not always love me. At first glance, Wagamama is not exactly ‘coeliac-friendly’ – big chunky noodles, soft chewy gyozas, soy sauce… drool – however, they do have a non-gluten section on their website, which you can see here. Although the choice isn’t huge, I can still order my pre-diagnosis favourite; Yasai Itame – yummy lemongrass, coconut curry with crispy tofu, rice noodles and plenty of veg (so not exactly friendly for my IBD, whoops).

Wagamama take cross-contamination very seriously. If you ask for the gluten-free menu, you’re given big books full of nutritional information alongside it and the manager oversees the whole affair. It’s so nice to be able to go somewhere and eat freshly prepared food. All I’m waiting for now is gluten-free gyozas!

  1. Bella Italia

The Bella Italia gluten-free menu is fantastic – you can order pretty much any of the pizza or pasta dishes as there is a gluten-free pizza base and a gluten-free penne pasta option. I love this because I don’t feel like I’m having to order something different – I’m just a normal customer, ordering from a (nearly) normal menu. Also, if you don’t fancy pasta, you can also have spiralised veggie ‘spaghetti’ (yum), which also features on the normal main menu.

If you love desserts, you have to try the Morello Cioccolato – it’s a naturally gluten and dairy free chocolate cake served with a gorgeous, rich Morello cherry sauce and it’s heavenly.

The allergens are indicated on the menu here.

  1. Handmade Burger Co.

Another menu that feels like a proper menu. You can pretty much order any burger with either a gluten free bun or coleslaw/salad. The bun isn’t amazing – but what gluten-free burger bun is, really? However, it comes it a plastic packet and then you assemble the burger yourself, so it’s good to know for certain that the bun is safe to eat! The coleslaw is really yummy though, so that’s a great option if you don’t fancy a sub-par bun.

Also – chips. Proper chips. Need I say more?

Take a look at the menu here.

  1. Pizza Express

Pizza Express have the nicest gluten-free pizza base I’ve tasted. It doesn’t taste like a regular gluten-filled pizza base, but it’s delicious in a different way and I think I actually prefer it! It almost tastes like a thick savoury crepe. The Padana is my favourite – tangy goats cheese and sweet caramelised onions: so good!

I’m always so excited by the fact that they do a gluten-free version of the dough balls starter too! It’s just annoying that you don’t get as many as a regular portion!

You can find out more here.

  1. Las Iguanas

I have so much love for Las Iguanas. Delicious South American food? Check. Cocktails? Check. Gluten-free tapas? Check, check check! The halloumi soft taco planks are to die for – I’ve even shared these with non-coeliacs and they couldn’t tell the difference! They also do fantastic coconut curries (my favourite!) and 4 different types of chilli (which I am determined to be able to eat again one day, damn you UC!).

They also do 2-for-1 cocktails all day, every day – and who can argue with that?

Check out the gluten-free options at your nearest Las Iguanas here.

 

Although there’s always a risk of cross-contamination in these huge kitchens, that shouldn’t put you off trying some of the gluten-free food on offer at these restaurants. Where do you love to eat? Give me recommendations in the comments, please!

5 Ways to Kill Time in Hospital

I recently spent a week in hospital due to an Ulcerative Colitis flare that got sliiightly out of hand. Whoops. Anyway, one of the things I learnt during my week cooped up on the Gastro ward was that spending time in hospital can be extremely boring. I thought I’d compile a list of ways to kill time between X-Rays, blood tests and all the other procedures. So, here goes! P.S. I apologise in advance for my terrible bowel disease puns…

Netflix and… pill?

Luckily, the ward I was on had great Wi-fi signal, which meant I could fire up my little Amazon Kindle Fire and access all my favourite catch-up TV apps and Netflix. It meant I could stay up to date with Strictly, Bake Off, and I could even binge watch some of the shows I’d fallen behind on (although I could have done with another week in hospital just to finish of Pretty Little Liars!).

 

As Smooth as an IBD patient’s bum!

I spent far too much time pampering myself. I took all sorts of lotions and potions with me! I found myself religiously coating myself in body lotion, face cream, foot cream, hand cream, lip balm… the lot! To be fair, if I hadn’t, the constant air-con in the hospital would have dried me up like a prune – so vanity definitely paid off in this case! Also, it meant that I never really ended up smelling like that awful clinical aroma that clings to the air in hospitals.

 

I Like Big Books and I Cannot Lie

I spend the majority of my free time reading anyway, so books were a complete no-brainer for me. I took four books in with me initially and also read from my Kindle. If books aren’t your thing, magazines, newspapers and websites/apps (I also spent an obscene amount of time on Reddit, Instagram and Snapchat) are also great sources for reading your time away.

 

Blog your Ar*e off!

If you decide to take your laptop with you – or you find yourself able to blog from your smartphone/tablet – blogging is certainly a way to kill time while still being productive. Even though I didn’t blog from my hospital bed, I would definitely consider doing this next time (although, I’m hoping that next time is no time soon!).

 

Relax your Mind… not your Bowels!

I love adult colouring books. However, I never, ever get around to finishing any colouring that I start. While I was in hospital, I spent hours colouring in Johanna Basford’s ‘Lost Ocean’ colouring book – and I still only finished one page! Colouring is one of the best ways to kill time in hospital; time seems to (at least) double in speed, it’s so relaxing, and you’ll feel like you’re being productive – you’re working towards an end-goal! Also, it’s a great discussion topic for visitors, doctors and nurses 😊

 

I know that there are probably looads of different things you can do to keep yourself entertained in hospital, and I’d love to know how you kill time as an inpatient! Let me know in the comments 😊

Me vs. Me: My First Time as an Inpatient

After a summer of tapering down on the pred, a lot of healing, and a huge boost of confidence in my ability to leave the house without there being some kind of IBD calamity, a return into flare-land at the very start of September came as a huge blow. At first, I thought I’d just made a few bad dietary decisions; maybe I shouldn’t have eaten all that lettuce in one go, or maybe I should have bought white bread instead of the much tastier multiseed loaf. But two weeks later I was half a stone down, having 15 BMs a day and, annoyingly, just about to start my PGDE.

I’d emailed the IBD Nurse at the hospital on the Saturday before I was due to begin my Primary school placement, but she didn’t get back to me until the Tuesday asking me to call her back on the Wednesday. Luckily, I was at the school I’d worked in for the past 4 years and they were aware of the rough year I’ve had with my health. The final straw was having to be sent home on the Wednesday because I’d had an accident – my first one at school. I told the nurse this when I called her and she said to come in for blood tests as soon as possible, and then I was to be admitted for a week. I couldn’t believe my ears! Wait a minute – are you sure I’m ill enough to take up a hospital bed? I cut my placement week short, and headed in to the hospital (an experience I’m still going to count as a holiday, since I was too ill to take one during the summer!).

Thursday: my bloods showed that I was dehydrated so the first thing to do was get me hooked up to a sodium chloride IV drip. They couldn’t use my left arm at all because the aforementioned blood test was a bit of a botched job and they’d gone through my artery instead – whoops! Very sore! I was on these drips for the first couple of days. I also had a couple of X-rays done, stool and urine samples taken, etc. I was so pleased to have my own private room on the ward with a bathroom – it took a few days for the steroid injections to calm my symptoms down.

Friday: The previous night, my consultant came to see me. I was in my pyjamas and just getting into bed, despite it only being around 8:30pm. She decided this was the perfect time to discuss the option of bowel removal surgery as the next level of treatment. I remained as optimistic as possible – let’s try the steroids again! Once Dr Doom-and-Gloom had left, I did start to panic. In the morning, the consultant on the ward came to speak to me and mentioned that there are other options before we have to start considering the surgery.

Saturday: I was told I was to have an unprepped flexible sigmoidoscopy (ooh, camera tests – my favourite). I had a bad experience with my last combined upper and lower endoscopy and the fact that it was unprepped was making me even more nervous. However, once I’d been wheeled down to the Endoscopy Suite, I was asked “So, have you had the enema?”. What enema? No one mentioned an enema! This was also a new experience for me. I was told to try and keep it in for 10 minutes – I don’t think I lasted 1! Maybe it was because of the inflammation but it stung really badly! Still, at least there was no Klean Prep in sight! Yuck! The procedure wasn’t bad at all this time around. I asked beforehand if I could have sedation and gas and air, which was fine because I was an inpatient and could be monitored. The results: since May, the disease has gone from severe to moderate! So, at least the last 3 months of prednisolone had done something!

Sunday: As my cannula had been in my left arm for 3 days, it was time to change it. My hands turned out to be no good (and they’re still black and blue to prove it), so they tried the left arm where I’d had the dodgy blood test. Ouch! The saline solution used to flush it out stung so much I wouldn’t let them near me with the steroids! Luckily, they had kept my other one in and so could still use that.

Monday: By this point, my university course was starting to make me feel extremely anxious. I didn’t feel that I was well enough to start and that by the time I felt ready I would have missed so much that I’d be playing catch up all year, which would add to how stressful the PGDE already is, and I was terrified that I would stress myself out so much that I’d not properly heal and end up back in hospital flaring again. I spent the day worrying, getting upset and checking the PGDE Facebook page to see all the stuff that I was missing out on. Stressing about stressing – not great. One of the other members of the course was messaging me about an assessment that was due in the following Monday (as I am writing this, that was last Monday) and that she’d volunteered to be partnered up with me for it. I’m sure she meant well, but this added to the amount of pressure I was feeling. One good thing that happened Monday, however, was that I was able to change from IV steroids to tablets again. And so, I started back on 40mg of pred. Again.

Tuesday: After 24 hours of being monitored on the tablets, I was deemed fit enough to go home. Although I was much better physically, I felt mentally and emotionally distraught. All confidence in myself had gone – I didn’t want to leave the house at all, never mind think about taking an hour-long bus ride into town for university. But, I couldn’t keep ignoring the emails asking for updates on my condition – so I arranged to go and see the course co-ordinator and ask him about deferring.

Now: I saw the co-ordinator on the Friday. I still wasn’t confident enough to get the bus, so I scammed a lift off my little brother. As much as I don’t want this illness to get the better of me, I had to defer. I believe that by deferring, and giving my body a chance to heal, I’ll do far better at university next year coming at it afresh. Until then, I’m doing relief TA work round at school just to get a little bit of money and once I’m feeling better I might look for other temporary work. I am also making a mission of getting healthier – if not by losing weight, then at least keeping off the pred weight and making sure I get enough exercise. The healthier I am, the better chance I’ll have of winning this war!