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. 

I'm Struggling with it

 I have to come clean. I’m struggling with this Crohn’s thing. I’m really struggling.

I feel myself retreating into my own space. And it’s isolated, lonely and dangerous.

For the past couple of days I’ve been in bed, watching Ja’mie Private School Girl, wishing I had that life with a strong, tight-knit group of friends.

I’ve been eating whenever, sleeping whenever and this isn’t a Crohn’s thing, it’s something worse.

I haven’t had a flare up in a while, but the fear of it is keeping me in bed. Every time I do go out, I have this blinding fear and it makes me actually sick.

On Thursday I had coffee with an old friend. I was only out for a couple of hours, but while I was out, I began worrying that I was going to get sick, then I felt my stomach twinge, then I told him that I had to leave and I did – almost throwing up on the bus ride home.

Once I got home, I felt fine after a while. I ate something (because I deliberately didn’t eat anything out) and after I had relaxed, I wasn’t sick anymore. I’m positive my fear and worry of being sick, actually made me sick.

So I’ve stayed in bed for the past few days.

Then today I got up, showered, washed my hair and went to have coffee with my best friend. I haven’t talked to her in a while, so I was glad to be catching up.

I even went to the shops early, got some money out and went looking for swimwear and tried on a nice bikini.

When I met with her at the coffee place, she was on her phone texting another friend.

Me being worried after what happened the other day, didn’t order anything. She called me a ‘killjoy’ and ordered while I sat down. When she returned she continued texting on her phone.

To say the catch-up was awkward would be an understatement. She talked to me about all the things she had planned this summer with the newly formed group I am not a part of (I would have been if I actually said yes to going anywhere). She talked about the music festivals they’re going to, and a lunch that they’re attending tomorrow. I did not get an invite, if you were wondering.

I cannot be surprised. I haven’t been going to anything lately, except coffee here and there – and even then it’s only with individuals.

She also asked if I had been invited to such-and-such’s 21^st. I hadn’t. Yep, it was awkward.

Where we’d usually be talking, there was silence. Where there’d usually be laughing we were looking at our finger nails and around the place in discomfort.

I’m really starting to think that my negativity with life, not doing things or going out AND this whole stress of the Crohn’s thing, is becoming too much and she’s not going to take it for much longer.

So 1: my friendships are disappearing.

2: Work has been giving me less shifts.

They’ve been great when I had my flare up in September and they still are amazing and understanding about what I’ve been going through. But I’m a liability. And because of it, even though Uni is finished, I still am working 1 to 2 days a week.

3: Travel – or lack there-of.

I won’t go into it much because I did a detailed post about it which you can find here, but I really need to get away, but Crohn’s is making me stay.

4: Lack of a love life

Not only has my fear of Crohn’s kept my friends at bay, but it’s also kept any potential guys away as well. I’m not looking for a relationship, but when it comes knocking I deliberately hold back. How am I supposed to date, when I can’t even eat anywhere without feeling sick with fear?

5: Friend’s wedding

So, great news – one of my friends is getting married. And she’s asked me to be a bridesmaid. But at my lowest, I consider telling her that she should find someone else in case something happens to me and I ruin her day. Her wedding day is about her and her future husband. Not her friend who has a digestive problem and causes a scene - even if it's accidental. 

6: Blame.

You see, it’s not Crohn’s as such, it’s the way I view it. And I’m letting the fear and stress of it control my life. I’m really trying not to, but I’m letting myself be consumed by it all.

7: I’ve stopped living

I feel like I’ve only gotten my life back, after my stint of depression back in 2012. Now that this Crohn’s thing is happening to me, I can feel it creeping back in.

I try and put a positive face on it – that’s what people tell me to do anyway. But its rawness is making that difficult.

I’ve said most of this stuff before, of course. I feel like this entire blog is me bitching about Crohn’s Disease. And I’m hoping with time, that things will be more positive and I can’t wait to share those moments with you.

This blog is about me living with Crohn’s Disease. And for the moment it’s more about me dealing with it – or maybe struggling to deal with it.

While it might be difficult to read (hopefully not as much as it is to write) it’s an important part of the process that needs to be blogged.

I’m not the first person to be diagnosed with Crohn’s and I know through the way I’ve been acting, I know it makes it sounds like I am but I do know that things will get better.

Just for the time being I’m still (urgh) struggling with it. Yeah, still.

I see the specialist on Thursday. Wish me luck! 

When Best Friend's and Crohn's Don't Mix

I'll be honest. I'm lying on the floor of my bedroom, my laptop in front of me. My eyes are puffy, red and the tears are still falling down my face.

The best part of being 21 is the social life; the parties, the coffees, sleepovers, movie nights and lunch catch-ups.

Being diagnosed with Crohn’s and still adjusting to the idea, your social life can be a hurdle. Or is it, the disease is a hurdle to your social life?

Either way, saying ‘sorry, I can’t come,’ is the most used sentence in your vocabulary.

My flare up started in June of this year – I’m still not on medication or have seen a group about handling Crohn’s and for the most part, I’m handling things on my own.

I can’t tell you how many times I’ve had to say ‘no’ to going out since June. The amount of 21^st’s I’ve missed, the parties, the lunches, going to the movies, seeing whatever else – I’ve been missing out.

I’ve become withdrawn and alone. I have my family and for the most part I have my friends; but that’s beginning to thin out.

My friends are 21; they’re young, free, they travel, they see things…and they go to things. Only my best friend knows of my situation. And she’s been amazing with everything.

Then today, my friends had coffee. I was not invited. When I asked my best friend why I wasn’t invited, she said it was because I never went to anything anymore and that I couldn’t be surprised that she’s giving up.

Yep – that made me cry.

It made me cry a lot.

I retaliated.

I got angry and upset. I told the truth.

I explained how frustrating it was for me, how much I hated having to tell them ‘no’, how I hated disappointing them and how Crohn’s Disease is affecting me right now.

I have not heard back from her yet. I’ll let you know what she says.

But in the meantime I’m upset and hurt.

Hence why I am lying on my bedroom floor, tissues by my side and eyes like I haven’t slept in days.

I don’t want to be one of those ‘*whinge*, I have Crohn’s and boohoo me,’ but right now was a time for one of those moments.

I think things will get better after I see the specialist group at the hospital. Problem is, I don’t know when that will be.

I see the Gastroenterologist on the 11^th of this month – If I haven’t mentioned a thousand times already and hopefully he will have news about when I see this group.

I’m hoping praying that this tiff with my BF passes and that not only do we move on and I get invited out more, but that I can positively say yes when I am invited and not let Crohn’s say ‘no’ when really I want to jump up and down and say ‘yes’.

If you have Crohn’s or other IBD issues, let me know. I’d love to hear how you handle a social life and not let your digestive system get you down! 

Friends With Benefits...oh, And Crohn's.

So I’m going to venture into a topic that I have not yet come across on any of the Crohn blogs I stalk.

The blogs are amazing, but (at least with the ones I’ve found) they are married or in a relationship with a significant other who gets there needs.

I am single.

And while it’s fortuitous that I haven’t had to awkwardly tell anyone who I see sexually about my problems and refuse the help they want to offer (I’m not into this whole ‘needy’ thing, but it’s something I think I’ll have to get used to) I still want to go out and have fun, sexy times.

Let me introduce you to…F. F is a guy who’s attention that I caught (he must be into shy, awkward 20-something’s). We've known each other for a while but not on any deep level. 

Fast forward to last week and we were having a discussion late at night online. Neither of us were drunk, but the topics we were having may have looked that way.

A few hours into the conversation I confessed to him that I would have sex with him. He then told me likewise. What was hypothetical conversation, turned into realistic expectations and we seriously considered a Friends With Benefits (FWB) situation.  

          

I really thought about it, and considering my situation, it’s not a bad idea.

Let’s break it down:

- My Crohn's is currently ok - not great but ok with help. 

- Unfortunately that help is not medication. I will be seeing people about this soon and I'm counting down the days. 

- Eating anywhere (aka dinner dates) is out of the question for me. 

- Actually, any sort of date-like activity where I don't know where bathrooms are etc. is a bad bet. 

FWB would mean no dinner dates, no meeting friends or family in stressful situations, it’s a no pressure environment and all in the space of a bathroom 3 feet away.

So, releasing the rebel in me, I agreed.

We then talked about it more yesterday where we discussed when and where.

1^st Issue:

Straight off the bat, the when part is iffy. 

‘When’ will always be the case of ‘when I’m well’ and that’s more than subjective. It’s more liable to change than life itself and making specific arrangements will always be a case of ‘well, maybe.'

2^nd Issue:

Where? Being both 21 and at University, we both still live with our parents. 

Organising a place either means at small times of the days when they’re not home or home is a no go zone. This is a massive let down, because it’s the perfect place for bathroom access.

3^rd Issue:

Like most people our age who are bound by their parent’s home, and are sexually active – it might sound like a cliché, but a car is an option. And an option I thought about; for 2 seconds!! The fact that it’s a tacky cliché aside, what happens if I have an attack? And I need a bathroom – like right now! Unless he’s got a camper-van with a bathroom (he doesn't and nor do I) back of a car is a bad, bad choice.

4^th Issue:

I even thought a last resort could be just that…a resort. 

Ok, well maybe more of a hotel – but did I mention we are poor, Uni students?

And to top it off?  He doesn't know about my Crohn’s. And I'm not about to tell him. It’s a laid-back, care free scenario and I'm not about to bring in any problems about myself into the situation. How lame is that?

The FWB is still up in the air. But it’s amazing how Crohn’s Disease makes you think about every asset of your life. Things that wouldn't even be thought about are now issues. At least for me they are. Hopefully this changes soon.