![chronicillnesscat:
[Image: 6-piece blue colored background with a Siamese cat.Text reads: “”OMG have you been crying?” “No, eczema on my eyelids.” “Is that even possible?””]
You tell me.
OMG Yes. My eye lids are the first place I get eczema when I get stressed or run down. I’ve had it for about 10 years off and on. I tend to think of it as an early indicator that I had Crohn’s even though I was only diagnosed with that a couple of years ago.](http://25.media.tumblr.com/tumblr_m2qwi6RmV01qi36g3o1_400.jpg)
[Image: 6-piece blue colored background with a Siamese cat.Text reads: “”OMG have you been crying?” “No, eczema on my eyelids.” “Is that even possible?””]
You tell me.
OMG Yes. My eye lids are the first place I get eczema when I get stressed or run down. I’ve had it for about 10 years off and on. I tend to think of it as an early indicator that I had Crohn’s even though I was only diagnosed with that a couple of years ago.
Hey you!
Yes, YOU.
I need your help to spread awareness about IBD. Remember that video I posted called We Are the Faces of IBD? If you don’t remember it go here and watch it. It was made with fantastic pictures of my followers ready to raise awareness.
I want to make a video similar…
Ok, yes, it sucks having Crohn’s. It’s a horrible, disgusting disease.
BUT…
if you’re looking at a diagnosis of Crohn’s these are the reasons you should be unscared :)
1. Some people with more mild cases only ever have one major flare-up from Crohn’s and then they go happily on their way. Maybe they have to watch what they eat a bit, but mostly their lives are unaffected.
2. At least now you know the reason why you’ve been sick and now you can do something about it.
3. The doctor’s ARE NOT gonna cut out your intestines straight away, unless you’re a very rare case. The first thing they will do is put you on prednisone or some other steroid - the side effects suck but they will try to start weaning you off the prednisone pretty soon. When you’re stuck on prednisone it can feel like forever, but again, except in rarer cases, it won’t actually be forever. The doctor’s will start trying the least harsh treatment and slowly move up to the more extreme treatments like removing part of the intestine. The majority of people can manage their Crohn’s just by taking some pills every day and watching what they eat.
4. You ARE strong enough to get through this. Sometimes it can seem overwhelming but you will learn a lot about your strength through this.
5. Your life is not over. Do some research, there’s plenty of cool people still out their living their lives with Crohn’s. Sure, sometimes you might need to be better at time management to make up for the time you’re tired. Or sometimes on my bad days (which are rarer and rarer) I wear adult diapers because then I don’t have to worry about crapping myself. But whatever, this disease is not who I am, and I will not stop just because of it - and neither will you :)
6. Now you can make a bunch of Crohn’s friends (just look around on tumblr, there’s plenty of us) and find people who understand what it is you’re going through.
I know I haven’t used this blog in ages! But that’s a good thing for me really….
But anyways, I just went to link a friend of mine here for a description of what a colonoscopy is like, and it doesn’t seem like I ever even wrote about it. So here it is:
Quick summary - a colonoscopy is not that bad. Sure it’s a bit awkward to just lie there while they stick a camera up your butt, but you have a nurse there just to make sure that you’re not freaking out. I don’t remember it being painful and if you try to view it scientifically it’s a really interesting experience seeing your insides on the screen.
The main thing that sux is the preparation.
Firstly, you have to drink only clear liquids beforehand. In my case they weren’t sure when I would be able to fit into the schedule so I ended up on clear liquids only for over 24 hours which was even worse because I’d just started on prednisone and had my appetite back for the first time in a month.
Secondly you have to drink this stuff that clears you out. The stuff they gave me said “ginger and lemon flavoured” - for starters, that’s not a flavour I’d ever consider using and also, it was disgusting. Worse, I was having a lot of trouble keeping certain things down still (milk was coming straight back up for example) so I vomited up my first lot (just as my roommates family arrived) and then I had to drink another lot! If you’re not having trouble keeping things down then this wouldn’t be quite so bad.
After that my lovely diarrhea turned into clear liquid. It was quite bizarre actually. Again, if you don’t have diarrhea making you go 10+ times a day, probably not so bad.
Then they give you this underwear that’s supposed to be one size fits all, and has ties on either side - like a big nappy :P The best thing is that really it seems to be HUGE size and it’s pretty much impossible to tie it in a way where it will stay up. Hilarious really :P Luckily, I didn’t have to leave my bed after I’d put it on.
Like I said, the colonoscopy is mostly awkward and a little bit of discomfort. There’s a nurse there who’s just standing by the whole time to make sure you’re alright. When I had it, they showed the output of the camera up my butt on the big screen. It was pretty clear to me straight away how sick I was.
I think they don’t always do this but for me they took some biopsies as well. That means they chopped out some tiny little bits to examine. That was actually my favourite part. The doctor would say “cut”, then I’d see the little clippers on screen move and feel a tiny little something in my stomach. I should add that it wasn’t painful and I found it cool seeing how it all connected.
The couple of times after when I went to the bathroom I poohed straight blood. But again, I was incredibly sick at the time and they had been cutting little bits out of me so it’s not that surprising. If you’re not quite so sick you probably don’t need to worry about that.
To be honest I’m kind of looking forward to my next colonoscopy - from a scientific point of view at least, to see what difference it makes not being near death. I’m meant to be having one soon so I don’t have long to wait :)
Life’s a bitch.
At least when I’m feeling shitty from Crohn’s I can still enjoy the puns ;)
Today I had my Remicade infusion and as a creativity challenge I only took a notepad and some pens. 4.5 hours with nothing to do but think and write. I wrote a few kind of cool things, maybe not as much as I would have liked, but I definitely got a lot of good quality thinking done. I try my best to make my infusion days a me-day. Instead of thinking of them as a pain in the arse I appreciate the day off work and do my best to be productive and relax. Crohn’s sux but where I can I try to make it work for me.
I think it’s funny when people with Chronic diseases say “I felt sick so I just took some [insert prescription medication here] that I had left over from last time”. I have a shelf full of left over medication and it definitely gets to the point where you know what your doctor is probably going to prescribe you anyway! :-S My GP can’t even pronounce the names of the anti-biotics I’m normally given as well as me :P
My friend is studying Post-Grad journalism and she decided to do her assignment write-up on IBD so she interviewed me last night about it. There were a lot of things that came up that I haven’t thought about in quite a while. It’s funny how I still have some issues but because I feel so much better than I did when I was really sick that I quite often feel WONDERFUL when in the past I might have considered that same feeling to be almost crap. It’s funny how Crohn’s can change your perspective on things.
