Putting Your Health First. And How it Can Suck.

It's been a long time between posts. And for anyone who might stumble on this little blog from time to time, and was waiting on a new post, I'm sorry. 

In good news though, I haven't been writing because A: haven't been sick! Or at least not long enough for me to write about it. And B: I've been busy. Aren't we all? Which means I'm up and about doing normal human being things. 

Or at least I have been. Not today. 

Which brings me to this post: Putting your health first. 

It's been a while since I've had to say no to something because of Crohn's. Unfortunately, it's the holidays here, blockbuster movies are all out, and there's so much to see and do because 'hey, it's the new year!' so it's the worst time for me to withdraw into myself. 

So, why am I going all recluse? 

I've been exercising! Yay (extra stress on the body!) - but let's save that for another post. It's also been Christmas - so overeating is mandatory. I'm also dehydrated; big time. 
Whatever the reason - be it one thing or all of the above, when I eat, my stomach kills. I have severe pain and have to lie down. Oh, another theory was gas build-up (either from food, or running) Crohn's is fun! 

And while it's only been happening for a couple of days now, and I'm not too worried, my anxiety is hitting high levels, freaking out that I might be sick. 

I'm also tired! And after how I've been feeling, could not be bothered to go out. 

So, in true Crohnserella style, I'm saying no. And for things I really want to do but can't, I'm ignoring messages because I'm that person who's being bitter and hating on why I have to stay at home, looking after myself, while people can go have fun. 

See, that's the 'And How it Can Suck' part. 

My reality is that I won't be able to do everything, all of the time. And while this is true for most people, for me it's a little more often. 

Hopefully, after my water-day (drink a load of water and that solves everything) I'll be okay, and ready to live life again tomorrow. Because as Crohnies, sometimes that's all we can do.

A Slice of Achievement

I debated whether to write about this or not, because while it’s for the achievement of a milestone…I haven’t actually gotten there.

Yet.

When I had my first flare up, back to yesteryear (2014) I lost a lot of weight – almost 10 kilos. The loss pushed me into the ‘underweight’ category.

I intended to put the weight back on after I got healthy again. Months later, it was time. I could eat and keep it down, I wasn’t running to the bathroom every ten seconds, and I could go out and live my life.

But the weight didn’t go back on – not for lack of trying.

I thought because I wasn’t being ill, that the food I ate would pile on the kilos. Things weren’t that simple. I even remember thinking the prednisone would make me puffy (water retention) and I would gain weight (water) that way. But that didn’t happen either. So dangerously underweight I stayed.

Fast forward a few years, and while I did gain a couple of kilos, it wasn’t enough to push me out of the underweight category. I was also nowhere near how much I weighed before I became ill.

It got to the stage where my GI referred me to a Dietician, who suggested I upped the amount of meals and bulked up my supply of fruit smoothies. It was an excellent suggested, but I wasn’t committed and only added a couple more kilos to the total.

By this stage though I only had around 4 kilos to go. But after months of sitting on the 45-46 kilo range, I was worried that I would never achieve the ultimate; 50 kilos.

Eventually, I lost focus on my weight. I figured (and was told by my GI) as long as I wasn’t losing any weight, then it was ok. Not ideal, but what can you do?

I was eating. I was also feeling pretty well, so I assumed everything was being digested ok. It was also a matter of putting on the right weight. It would do me no good to eat foods that (while would help me gain weight quicker) would cause me to go into another flare up due to its high salt, or sugar etc., and resultantly be worse off than before.

Eating high-fibre (chia seeds) and healthy fruits and vegetables would gain the correct weight. And hopefully I’d stay healthy!

But it was tough, and eventually I thought I’d never reach my goal, so I stopped weighing myself.

Today, I had a GI appointment in which they weigh you. It’s been over 3 months since I last weighed in at 46 kilos.

Today’s scales showed a weight of 49.9 kilos! I’ve basically made it! I know I haven’t fully reached my goal, but I wanted to share it with people anyway. I’m very happy that I’m almost there! It’s taken literal years to put that weight the flare-up took, but step by step, it’s been put back on.

And more importantly – I’m in a healthy weight range. Which is really all I can ask for :) 

The 'Foreverness' of Crohn's

It’s hot here. Like, really hot. It’s 10pm and 27 degrees. With the forecast to be 39 degrees over the next two days, the important thing is to stay hydrated; if not, Crohn’s symptoms could have a field day.

With my mind on Crohn’s, I headed onto the Crohn’s forum I get support from. There I found a thread titled, ‘The Worst Part about Crohn’s’.

I read through most of the answers, and while the majority were about anxiety, uncertainty and that jazz, which I totally agree sucks, I don’t think it’s the worst.

For me, the worst part about Crohn’s is the foreverness.

For as long as I live, Crohn’s will be there with me.

Crohn’s will accompany me on this year’s trip to New Zealand,

It job hunts with me,

It’ll be in the car on the way home from work tomorrow,

It will be a contributing factor about if and when I get pregnant,

It will walk down the aisle with me.

Crohn’s has been all my hospital visits after the age of three. It is also easily the thing I think about the most in my everyday life, and effects the decisions I make (what to eat, for example).

This is not to say that Crohn’s dominates my life. Or that my illness controls me.

But, as the foreseeable future is concerned, it will be with me forever.

It shouldn’t come as a shock – chronic by definition is an illness or disease lasting over 3 months, and in most cases incurable. While it may not show obvious symptoms, or even go into remission (allowing the person to be healthy over a period of time), but by definition, Crohn’s will eventually reoccur.

It’s always bubbling behind the surface.

It may not show any signs while I’m in New Zealand (it didn’t for my last overseas trip),

It stays calm during job interviews,

Can be the perfectly quiet backseat driver.

Mostly I don’t even notice it. However, Crohn’s is still there.

And that’s what scares me the most.

It's the Little Things

So a crazy thing happened to me just now.

I pooped.

Like a normal one.

I was happy and relieved, quickly realising how sad it was that I was reacting this way. Having a normal BM is not something someone gets excited about – it’s just (or should be) a normal part of life. But for me and other people living with Crohn’s or other IBS symptoms, a normal BM can make our day when our digestive systems are down.

So why get excited about a poo?

It’s probably because I haven’t passed something that normal since last Wednesday. I’m hoping this is a sign that I’m going to get better and whatever it was that was causing my digestive issues all these problems this past week has gone.

I’m cautiously optimistic about my body at the moment. I’m still terrified I’m going to have stomach pains tonight and end up spewing my guts up when I awake.

But I’m just going to take everything day by day and see how it goes.

***

Just got a call from my GI. After having a blood test yesterday, my results are in.

*drumroll please*

Unusual liver reading.

*round of applause*

This could be the cause of my digestive issues – maybe, maybe not. But it means more blood tests...great.

Welcome to Crohnie living.

Things can Change so Quickly

In the simplest term I can put it; I’m scared.

Since Wednesday (5 days now) I’ve had the worst experiences known to me in Crohn’s kind.

**TMI SERVICE ANNOUNCEMENT** do not read ahead if squirmish

On Tuesday night I had the worst stomach ache. Then Wednesday morning, I woke to the sudden need to go to the bathroom. I had some of the worst diarrhoea I have ever experienced. It was endoscopy prep medication bad.

That day I ate very little and wasn’t hungry. Diarrhoea stopped around lunch time. Then around dinner time, my stomach began to hurt again and continued till I fell asleep. In the morning I woke with the sudden bathroom realisation again, and the cycle continued.

It’s been that way ever since.

Unfortunately, I thought it was just a stomach bug and didn’t ring my GI sooner. Then it was the weekend, so I can’t ring them till tomorrow.

In five days my weight has gone from 45.5 kilos, to 41.3. HELP!

I just have to sit tight till I can ring someone soon.

I’m scared, exhausted – like, even writing this is tiring me out – I’ve been moody and anti-social.

In this case, things turned on a dime. I was going really well, no problems, then in days my health just deteriorated. I don’t know the cause. The only different thing I have done lately is add 25mg to one of my tablets (on drs orders, of course) but I feel like something so small couldn’t cause this huge change. Besides, the tablets are supposed to make me better, not worse. Adding should improve my situation.

It’s not yet been a week, but I feel like this change has already affected my life greatly. I have been missing out on work – it’s already been 4 shifts I’ve had to call in sick. I’ve stopped talking to friends and replying to things about going out – I don’t want to burden them with what’s been happening and bring them down. And I’ve been lying to my family about how much I weigh. They were upset when they thought I weighed 43 kilos – I can’t tell them it’s actually 41 now.

My worst case scenario is someone is going to tell me to go to hospital; I see that happening tomorrow when I ring the GI. But I don’t want to think about that, and hope they can offer me something (advice, help) that will hopefully get me back on track as quickly as this all started.

Things have just changed so quickly. It reminds me of my first major flare-up. And I don’t want to go down that path of being sick for months, ever again. 

My 2016 Post.

I haven't written one post in 2016. My bad. 
A positive reason for this though is my condition is (mostly) being handled. So there hasn't been a need to write anything. 
I've also been busy this year: I did my honours project, I've been going to work, I go out with friends, and even have been going on dates in 2016 - that's cool. 
I'm still on Prednisone - didn't think I could be on it for so long, but here we still are. 
And I'm also taking Puri-Nethol - which last week got upped, so now I'm taking even more of it. 
My dosage got bigger after I saw the GI last week. I won't lie; I was pretty disappointed when I found out that my Puri-Nethol dosage was getting bigger and not stopping all medication like I hoped. But as long as I'm mostly healthy that's the important thing, right? 
In 2016 I did my second endoscopy/colonoscopy in my life - maybe a post on that to come later...or on second thoughts, maybe not. 
I'm STILL trying to gain weight - at least I'm not losing anymore so that's a positive. 
I received news that one of my friends might have IBD issues - I'm hoping they'll be OK once they have their procedure done. 
Anyway, sorry I haven't been around. But then I'm happy that I'm healthy-ish. I'm sure I'll be posting more...did I ever tell you about my holiday? Ok, I should do that if I haven't! 

Hope everyone has been well. 

I'm a dil!

I decided it was time for me to get into the dating game. 

So recently I began dating again since I got my first flare up.  

And while I would love to post about how that's all going, this post is about how tonight I went against my Crohn's Rules and stuffed things up. 

Things have been going well in terms of this dating *squee!!* and for the most part, my Crohn's haven't gotten in the way. I've been smart about where we go and what we do for dates. 

It's all still very new - we're still in the getting to know you phase, and he doesn't know about my Crohn's. I'm happy to keep that under my belt for now. 

It's nice to feel young again. 
Even though I'm only 22, sometime's Crohn's makes you feel a lot older. 

Tonight we had planned to go out and see a band. He did originally ask me to dinner, but I suggested something else, due to me not feeling comfortable eating out in public - long story! 

But then tonight, Mum prepared a roast for dinner, and even though I thought about skipping it due to the big meal, I ate it. 

It's healthy, and even though it's heavy, I could use a big meal. 

Now my stomach feels like a bowling ball and I had to cancel. 

Cue me cursing my stomach for not being normal and stronger and not being able to handle one dinner! 

I ignored my own Crohn's rule and ate a big dinner before I had to head out. 

I can do one or the other, but both was too much for my body to handle. 
And I can't ignore the warning signs to feeling ill.
Next time I won't put my fate in my stomach. 

However it would be great, to be able to do normal things even just for one night.