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.

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. 

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.