Imuran. The Beginning

Firstly sorry for the time in-between posts. No excuses. 

Though if I supposedly had one, it would be that I've been using this time to come to terms with my Crohn’s, taking some serious medication and living each day as it comes (a motto I hope reduces my worrying ways).

I'm glad to announce that the Prednisone has been doing wonders for my body. I'm no longer having random attacks and I've been feeling better. I do find that I get ill when I'm nervous or eat the wrong foods, but for the most part, I've been doing well. 

I've even had more dinners out in a public setting. As well as attending movies, work and other factors that make me Crohn’s nervous. 

I still take a lot of precautions when I go out - including what I eat beforehand, what I wear (though as it’s Winter here, layers is working in my favour), I like to know how long I'm staying out, and of course the ever present knowing where toilets are. 

Being able to drive helps. When I make my own way there, I know that if I feel ill, I can just take myself home. 

So, the title. As it suggests, I've started taking Imuran. I have heard mixed things about it (as you find with most medications) and I was nervous when reading through the possible side effects and so forth. 

It’s been my fourth day of taking it and (knock on wood) it’s been OK. I'm concerned about this whole liver side effect as well as the skin. But if Imuran keeps me healthy,  then I think it’s the way to go. 

I hope to be writing more about my Crohn’s in the hope that anyone out there who is struggling can read this and I hope it can offer support. 

Prednisone Continued

Hey guys!

So today is my 6^th day of taking prednisone; or Panafcort, either one is good.

However ‘good’ would not be the word to describe how I’ve been feeling.

I’ve been lax in my writing because for the past few days I’ve been so sick I feel like I’m going to throw-up. It’s terrible!

Ever since Saturday I’ve been sick every morning without fail. Luckily for me, On Saturday the symptoms were gone by the afternoon, but through Sunday to Tuesday it’s continued throughout the day.

I felt so nauseous that even thinking about it now is making me feel dizzy.

I had to call in sick to work yesterday which would be bad enough except; 1: I work in retail and 2: being at this time of year – I could only profusely apologise to my Manager. Over and over again.

This morning I didn’t wake up and immediately feel the need to crap myself. 

That was a good start.

But I was sick after breakfast.

I’m worried that because I’m sick after I have my tablet, that the tablet it going straight through me and isn’t absorbing into my body and therefore doing nothing.

I’m only thinking this way because I still haven’t pumped up like a marshmallow yet. I don’t really know what to except. I keep thinking I’m going to wake up one morning and BOOM! I’m the stay puft marshmallow man. I have also been sleeping like a log. My specialist told me that insomnia could occur over the first few days and after the first night of a restless sleep, I haven’t had any since. Which (don’t get me wrong) is great, but it’s a fuel to the fire of ‘is it actually working?’

I’m also finding that my stress and worry is not helping. Well, duh! But even with the medication, every time I start to stress I can almost feel my stomach curdle. I’ve got somewhere to be today and I do not plan on cancelling!

Adding to the pile of ‘actually I’m gonna have to bail’ was a movie night that my friends had organised. I felt so guilty after I had said an enthusiastic ‘yes!’ to, for me to then awkwardly decline. I had written (well the start of) a post about it – mainly through tears (why?!) but I never finished it. I’m pretty sure I ended up falling asleep. Take that insomnia!

Anyway, back to stress. My goal is to just breathe and worry less (hey, that rhymed!) Sorry. So all I need to do is try some relaxation and breathing techniques to get me through. If they can get me through to 2.30, I’ll be happy with that!

**

Ok, it’s now past 2.30 and I’ve gone and come back to the thing I had to go to. And it worked. I think. At 1.30 (when I was due to leave) I was nervous about leaving, but once they had arrived and were ready to go, all feelings of sickness and nervousness disappeared and I felt fine. I’ve even come back home and I’m still feeling ok.

I know Crohn’s isn’t a 100% stress and worry thing. And even though it doesn’t help to stress or worry, at the same time by not doing those things it will not guarantee that you’ll be 100%. It will not get rid of symptoms if you’re experiencing sickness or a flare up.

But I know for myself that, worry especially, fuels my Crohn’s fire and it’s something I’m trying to overcome.

Like hopefully tomorrow, when I’ll get my Christmas shopping done. Not that I’ve started. Unfortunately because I’ve been sick, I haven’t been leaving the house and add to that my brain telling me Christmas isn’t for weeks and weeks, I haven’t exactly been thinking about shopping/gifts/food etc. that I should be on top of by now.

Actually, that reminds me – I’ll be heading off to the coast in a week! I’m so excited to get out of this place and have at least a few days of relaxation and be somewhere that goes at a much slower pace. I also haven’t been to the coast in literally years, so I’m very excited about that.

And of course it will be Christmas! It will be my first Christmas as a diagnosed Cronnie! Not really something to be happy about, but look at the bright side right?

Hopefully I’ll have another post up before Christmas and I’ll definitely tell you how the brandy butter* went down.

Also sorry about any spelling/grammar mistakes in this post; I’m exhausted and I don’t trust my tired editing self. However I’m going to publish this post now anyway.

*hands down the best part about Christmas. For those not in the know, brandy butter is traditionally used on the Christmas pudding. Made with butter, brandy and icing sugar, if I died eating it I would die a very happy woman indeed.               

Panafcort: Day One

So I saw the specialist on Thursday. And things didn’t go to well. Apart from me having to wait for over half an hour while I sweated, worried that I was about to be sick, I also had to sit in a crowded waiting room which included three screaming children.

I came close to standing up and telling reception that I had to wait outside; scared I was either going to throw up or pass out, when eventually I was seen to.

Anyway, that’s not what this post is about. Fast-forward to 20 minutes later, and I was so close to tears at the thought of taking Panafcort, or prednisone tablets. Or to put it another way – steroids.

My Aunty has Crohn’s and I remember her telling me to avoid any steroid medication if I could. So when the specialist said I’d be trialling it for a month and a half (give or take) I was not pleased.

I voiced my concerns and he told me that this was the best option for me right now. I’m not 100% convinced but if it stops the pain, the diarrhoea and anything else I’ve had to deal with, then I’m game. Sort of.

After I filled out my prescription, I went into to my car and I cried. I went home and I cried some more. Just looking at the bottle made me want to cry and I got a sleepless night on Thursday just thinking about taking it the next morning. The specialist said I was to take it immediately, starting the next day.

However, I called up my cardiologist first, just to make sure that the medication was ok for any heart problems that I have. Turns out it should be fine. The specialist told me this as well but because I’m such a worry wart, I had to make sure! I also think there was a part of me that was hoping that it wouldn’t be ok, and I wouldn’t have to take them.

Can you tell I was scared?

So Friday morning I took my first tablet after a big breakfast.

I had to get my brother to distract me, because I was so scared I felt like I was going to be sick after I took it. In my mind, I thought of Popeye and growing muscles and fat immediately and becoming all strong puffy. I imagined transforming from me to a marshmallow in seconds.

But that didn’t happen. In fact, I felt fine.

I even made it to work that afternoon.

By 9 o’clock we were closing the store, and I realised while my co-workers were beaten from the afternoon/nights work, I still had energy. On the way home, I was talking to my dad so fast he even voiced it aloud.

I felt hyperactive. Now, I don’t know if this was the panafcort. In fact, it probably wasn’t and in reality just my relief that I didn't go crazy or die after the first tablet.

I went to bed around 12am. However my earliest record of actually falling asleep wasn’t until 2am. And even then it was for 15 minutes thereabouts.

Throughout the night I tossed and turned and found it difficult to get to sleep. I was in and out of consciousness all night and I couldn’t tell you how much sleep I actually managed. I also had the weirdest dreams!

I was told by both my specialist and my chemist that insomnia may occur over the first few nights. I didn't realise it would happen after only one 25mg tablet.

Again, I keep thinking that maybe it wasn't the panafcort and that it was just me thinking that I wouldn’t get to sleep, and I was worried and stressed and that’s why I didn't get to sleep. But then who knows. I’m just trying to be as positive with this as I can.

Especially when at 3.30 am I had a Crohn’s (?), Steroid (?) attack. Then another at 8.30. I put the question marks there because I'm not sure whether it was my body reacting to the medication – which I read could happen when you first started taking them, or whether they’re not working yet and I just happened to have a mini Crohn’s attack.

Either way, after my second attack I had to change my bed sheets, so I'm not happy.

Today is Saturday, and I've taken my second dose this morning. I still weigh the same as I did yesterday morning (again, my irrational fear made me think I was going to gain 5 kilos overnight through water retention alone), I had another big breakfast and took my second tablet.

Like yesterday morning, I found the tablet dissolves really quickly and I felt sick with the after-taste of the tablet in my mouth – yuck! I'll have a tea or something ready for tomorrow morning.

So, there it was – day one. I'm already half way through day two and not much has changed. I do still feel like I have a lot of energy and I've been making sure I drink water like crazy. And seeing as it is summer here, I should be keeping hydrated anyway. I'm also finding it’s not so much physical energy, but mental – I feel like my brain is going at 100 miles per hour. But again, that could just be paranoia!

I'll let you know how my sleeping habits work out, and what other effects might occur during my course.