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. 

Public Dining

So it has been a long time since I've written anything. Sorry. 

Last Saturday I had a milestone I thought was worth noting. 

I ate dinner out in public. 

It’s been a year since my first real flare up, and it’s been months since my diagnosis of Crohn’s. I've achieved little things here and there - banana bread with a coffee date, hot chips out on my birthday. I think I even managed drinks at New Years. 

And finally last Saturday I ate a proper meal out. 

Things I noticed while I was out. 

Pre leaving I was nervous as hell
I even contemplated not going several times. I freaked out and I freaked out some more as I got ready for dinner. 

When we arrived I searched like crazy for a bathroom
Not that I needed one then and there but I knew it was something I would have to know about - for peace of mind should the occasion occur. I was in luck - the woman’s bathroom was right near our table - granted it was the opposite end to where I was sitting - but it was right there - score!

I drank only water  
I was driving, so I couldn't drink alcohol anyway, but I wasn't even going to chance a soft drink. 

I picked something from the menu that I knew was safe
And I had about 10 bites. I also ate incredibly slowly. To the point where the waiter came and took my dish - I didn’t mind though, at least I didn't have to keep eating. The people closest to me asked if I had finished yet. I replied that I had, and they were satisfied. Needless to say, still had a lot of food on my plate. 

I didn't eat any birthday cake while out
Did I mention it was a birthday party? I was lucky; because it was my Dad’s cake that we brought, we got to take it home and I was able to have some then. 

There were times when I looked like I murdered someone because in my head I was thinking worrying about being sick
So yeah this happened a little bit - in particular when we first got there/started having food. Everything I ate, I analysed, making me look like I was a serious food eater. I would also drift off and think about how my stomach was feeling. I can only imagine how murderous I looked when that happened. 

I took photos to distract myself
So this was interesting. I would go around getting photos of people because I found that it made me distract myself from being sick/worrying about being sick. 

On the drive home I couldn't have been better
When I knew we were leaving and it was time to go home, I didn't think twice about my stomach because I was heading to the safe haven that is my house. 

I had a really good time last Saturday - and tonight I have other plans for dinner again - this time a farewell. 

In my head I'm already worried about being sick, what I'm going to eat, how long we’re going to be there, etc. but at least if I go, at least if I try - then that’s worth something, right? 

I also managed dinner a few weeks ago at a friends place. It was amazing - it didn't cross my mind that I could be sick or that I would be. I didn't even think about it till I got home. It may have helped that she lives 15 minutes away, and it was in a private home, but still...every step counts. 

Hopefully I will be on here more - if nothing else to vent and talk about my anxiety with Crohn’s and how exactly I'm dealing with it. 

Period Talk - For When Crohn's Isn't Enough

A large part of this blog is how my body just doesn't want to cooperate with my mind, focussing on Crohn’s and how it affects me.

I want to go somewhere, I get sick.

I want to see someone, I get sick. 

When I try to not let it affect me, it does and so forth.

But I thought in this post I would branch out and talk about other moments when the body just doesn't do what you want or when you want it to.

And New Year’s was one of those moments.

So it was a miraculous…miracle(?) when I had a party to go to and Crohn’s was not on my mind. Ok, so it was on my mind a little but for the most part it was pretty safe to say that I had something a lot better occupying my mind this New Year.

Remember the post about the FWB situation?

Well I've still been talking to him…unfortunately only talking. But I received a message from him (in my post about it, I called him F) asking if I was available New Years. Of course we both had parties to go to that night but there was nothing wrong with ‘catching up’ beforehand.

And if that wasn't good enough news, my Crohn’s has been (somewhat) at bay. But that didn't matter, because I had decided that I was going to go anyway.  I wasn't going to be the Crohn’s patient.

I was going to my friend’s party.

I was going to F's place.

And I was going to have a fantastic start to the New Year.

Then on the 31^st I woke up and went to the bathroom.

I had my period.

At first I was in denial.

“No, no, no, this cannot be happening!” I thought as I went back to my bedroom and into bed.

This wasn’t fair! Why today?

I distracted my mind with other things, hoping that maybe I was wrong. But when I went to have a shower, there was no denying that it had come.

My body decided that today would be the day I got my period. I checked my calendar for the last time I had it, and it had arrived on the 4^th of December. And today was the 31^st.

It was early.

Really?

My body and I are so not on the same page.

To say I was upset would have been a bit of an understatement. For once in weeks I wasn't worried about Crohn’s. I had things in place in case something happened. I knew what to do if something happened and I had thought of everything. I have been taking my medication (not that I think it’s doing anything, but whatever) and for once I wasn't going to let Crohn’s from stopping me being young. And wild.

My period stopped me instead.

It’s amazing how our bodies work.

It’s also incredible how they seem to know how to screw us over at the same time.

When one thing is under control, something else seems to happen.

So I didn't go over to that guys place that night.

But I did go over to my friends New Year’s Eve Party.

I caught up with friends that I haven’t seen in weeks/months. I even managed to have something to drink – mainly because my best friend was shoving shots and all manner of cocktails in my face. And I even ate while I was there! This was a big deal for me, guys!

So I didn't make it till midnight.

Yeah, around 11:30 my body had had enough and I thought I’d better not push it. But I was really proud that I had actually made it to a party and had a good time. Even if my friends gave me a nervous look every time I went to the bathroom – it was only to pee, I swear!

So like I thought it would, my body didn't cooperate with me this New Year’s. It just wasn't in the way I expected. 

And I'm Back Home - but Merry Christmas!

Merry Christmas and a happy new year to all!

I’ve been down the coast and back already. It went way too fast!

I remember a couple of years ago I was having Christmas down the coast with my family. During Christmas lunch my stomach began to hurt and I was in a lot of pain. I had to leave the table and lie down, missing out on the legendary pudding. After a lie down I felt better and went on with the rest of the day.

At the time I didn’t know it, but it was a Crohn’s attack. Nothing more than stomach pains but it was the start of what was yet to come in a couple of years. I’ve had many since then but I do remember that Christmas lunch.

So needless to say I was a tad worried about this year’s and after officially being diagnosed with Crohn’s I can now put a name to the face...and pain. Pain I was worried would stop me from enjoying Christmas lunch again this year.

I had a small serving when it arrived and I took my time eating. We (my family and I) cracked open the bonbons and the champers (not that I had any of course! That’s just being stupid).   

         

I managed to eat everything on my plate. And the pudding that came after.

No pain, no bathroom needed, no worries! 

In fact the whole trip did me a world of good.

I haven’t been on a holiday in years (literally) and it was nice to leave the house for a few days and breathe a different air.

Of course I wish it was longer and I can’t wait till I get to go back down again, but it was lovely while I was there.

I also have great news! I managed to go to the beach without protection! One of my greatest worries since Crohn’s became official was that I would have an attack while I was out and I would be unprepared. So ever since I’ve been wearing ‘protection’ in case I get caught. I haven’t ever been caught out but it puts my mind at ease.

Obviously swimming wouldn’t allow me to wear anything underneath, so I only wore my swimmers and shorts. And it didn’t bother me at all!

It was great to not worry about it, and to just go and have fun!

I went to the beach with my brother a few times; having a swim, walking down the beach and just being relaxed.

I’ve been struggling with being ‘normal’ with Crohn’s and it’s been effecting how and what I do. But down the coast it didn’t.

There was one time where I didn’t go to the shops worried I was going to be sick and while I wish mentally Crohn’s hadn’t taken hold, it was a small thing that I won’t let get me down.

It felt so good to just not even think about it. I still am taking prednisone and watching what I’m eating but being down the coast was lovely. And I can’t wait to go down again – hopefully soon, but knowing me it won’t be for a while.

It’s amazing how going away can help and the change of air does so much good.

I wanted to wish everyone a lovely holidays; wherever you are from. Stay safe and be happy and enjoy this time.

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.

Lessons Learned: Ice-Cream

If you've read some of my earlier posts, you will know that I've only been diagnosed with Crohn’s Disease since October of this year (2014).

One of the many joys of being diagnosed is finding out what foods could potentially set it off.

Very early on I discovered that take-away Chinese Food was a nightmare for my stomach.

As is wine; I found this out the hard way. However, I had a night out where I stuck with vodka and cider yet my stomach was solid like a rock (in a good way). It didn't make a peep when I had 3 shots of vodka, yet the night I had half a glass of wine it went into meltdown. At least I was at home at the time.

As of last night, my list consisted of these two things only. Two foods/drink that I could say ‘yes, I'm positive that this will be no good for me.’ When you think about it, both things are not healthy or good even for the best of stomachs, so it shouldn't really be a surprise.

Then last night, I can confidently say I can put a third item on the list.

Yep; ice-cream.

Things were going well for me last night. I hadn't had any stomach issues and I managed to down all my dinner; which is good because I need to gain some serious weight.

Then for dessert, Mum suggested ice-cream. I wasn't worried (didn't think twice). I've had ice-cream before without any worries, so I made myself a big bowl.

Within a couple of mouthfuls my stomach made some gurgling sounds (if you have any IBD issues, you know exactly what I’m talking about – you can even feel it). I shook it off though and continued to eat.

It wasn’t long after I had finished that my stomach starting to hurt. And the pain was extremely bad. Just as bad when I had my flare up.

I went into my room where I went to lie down. I’ve discovered a position that stops these pains almost instantly and the pain was disappearing.

The gurgling of my stomach hadn’t and it took seconds (literally) between me lying on my bed, to me on the floor of my room, shitting my pants as my Crohn’s attacked.

I really didn’t have any time to make it to a bathroom and after it had stopped, I went to my bathroom to clean myself up.

Sorry, if you’re eating dinner while reading this, by the way.

To say being a 21 year old, who literally craps her pants out of the blue is a mortifying experience would be an understatement.

I even (once I cleaned myself up) had to grab carpet cleaning products to…ah…well clean up anything extra.

Yep, 21 and living the dream.

I almost forgot what it was like to have that happen. But when it did, the feelings came running back. It’s a stark reminder of how Crohn’s Disease can work.

Even today, when I eat things I feel like I’m going to be sick. I’m hoping it will pass in the next few hours hopefully, and while it might not have been the ice-cream, I cannot help but be suspicious.

So this morning I put ice-cream on the list.

While I won’t count it out completely, I don’t think I could never deny myself ice-cream forever. I'll just make sure that I don’t have to go anywhere the next day when I eat it. And make sure I’m not out in public when I partake.

So, discovering what foods may or may not play a factor is always fun to discover. Just make sure you’re at home just to be on the safe side.