Thread: Freedom! (from the hospital)

Was in the hospital since tuesday, missed updating my blog on the wednesday which annoyed me, had to get my microdermal piercing removed which was a hassle as I was having an MRI (either scalpeled out or ripped out by a magnet, I chose the former )

Threw up lots and lots and lots on tuesday and had to go on a drip, ended up pretty much fasting for 48 hours. Now I am on steroids, lots and lots of steroids and am absolutely wrecked.

Was stabbed an uncountable amount of times by needles, given an IV drip in the back of my left hand, (I'm left handed. damn righties) for first procedure my veins had pretty much collapsed because of dehydration so it basically became a stabbathon to find a workable vein.

Got out today, finally.

Think I'm going to just take the weekend and play video games and the like, after all, I deserve it

But it was worth it, got a diagnosis, crohns disease, could have been a lot worse and it was caught kinda early so though it's a lifetime thing that should hopefully help in reducing symptoms and getting it into remission quickly so yay!

Wow! What a hectic week for you! Glad all is well and you have received a diagnosis. Always better when you actually know what is wrong

Enjoy the video games and chilling! I'd say you most definitely deserve it!

Huge doses of steroids suck, it's not just the moon face, it's things like osteoporosis and cataracts if they keep you on them long term. I also have a relatively rare immune system condition (Wegeners) and my best advice is to find out as much as you can about it for yourself, find out who specialises in treating it, and then get referred to their clinic, there are some great sources on line if you are tenacious. Doctors have to know so much about so many things they can't possibly absorb all the information about rare conditions, you can become more expert than your GP about your particular disease. They are very knowledgeable and well meaning, don't get me wrong, and it certainly doesn't pay to put their backs up, but they can make errors or miss things when it is something they don't come up against often. Become your own expert and sometimes an "innocent" question can save you a lot of grief, but don't charge in with "But on the web it says ...". That is inclined to put their backs up. You can tell a good doctor, when you bring up something he isn't sure about he says so and looks it up, a bad one gives you a load of fluff to cover his ignorance and give himself time.

One last thing, follow the advice about reducing steroids religiously, your body has to get used to making its own again. I once had a bad gut that stopped me absorbing them properly, I tell you when your body runs out of steroids it makes you feel about as bad as it is possible to feel.

Edit, And GOOD LUCK! It sucks, but there are worse things.

@ Jinxi, Thanks, I'm really happy I got a diagnosis, especially as it's not a life threatening one, sucky, but I should still have a normal lifespan.

@ Olly, I've been looking it up but there is a lot of crap on the internet and most of the links that are brought up are for diets the completely cure it 100% no matter what all you have to do is pay 9.99 for the next year and we'll send you a badly formatted ebook that most likely says "eat healthy".

The doctor my own GP recomended I go to is great, he run's his own clinic that specialises in Crohns so was very very lucky in that regard. I've only ever been on steroids once before (for bells palsy) and though it was a lower dose, I found I was STARVING all the time which was sucky. though I have protein shakes this time to get my protein levels up to normal and protein is fairly filling so that should help. I also have lots of calcium tablets to try prevent any bone problems, the doctor said he doesn't like using them long term so it's just to bring down inflamation.

My next plan is to try and find some forums relating to Crohns and see if there are any recommended books to read or some good repositories of information on the web that are great for general knowledge. I do know I have to be careful with eating food and malnutrition as sometimes you just stop feeling hungry or you're eating normally but your body isn't absorbing the nutrients so have to watch out for that.

The one thing about Crohns is that there is no hard and fast rule of don't do this this or this, or these foods will cause a flare up so I have to find what doesn't work for me and avoid those foods.

Thanks for the luck very true, at the time I was worried it might be cancer as I had a lot of those symptoms as well, I'm just happy I know what it is and that though it can be problematic, it shouldn't cause too many problems if I am very careful.

Crohn's sucks but at least you know what the issue is. Good luck!

Glad to hear you're free! I just had a recent scary trip myself so I'm right with you on savoring being at home. Hate hospitals, ugh.

Best of luck to you ProcrastinationS. so glad you found out what it is and can now move forward. Hospitals give me the willies.

Thanks everyone!
I don't mind the hospital itself, it's the lack of sleep, the creepy old woman who kept ringing the phone looking for the person who was in the bed before me, the constant stabbings or "injections" and the inability to shift around while sleeping.
Nothing feels as good as your own bed.

I am really glad I know what it is, I'm quite lucky that I wasn't one of the people who was given false diagnoses or fobbed off for months or years and that it was diagnosed relatively quickly.

Go with what Olly said, research for yourself! Be your own best advocate and though you know where to start now, do not believe just anything you are told. I have a friend dealing with this, and you must be very careful with the medications and side effects. Hoping you get better!

Originally Posted by ProcrastinationStation

Thanks everyone!
I don't mind the hospital itself, it's the lack of sleep, the creepy old woman who kept ringing the phone looking for the person who was in the bed before me, the constant stabbings or "injections" and the inability to shift around while sleeping.
Nothing feels as good as your own bed.

Not to mention the crummy food...but that last line is only too true
You'll be lucky not to develop arthritis from the steroids. I had TONS of them during my 60-day hospital stay and have achy joints and digits. Which completely sucks because I'm having to relearn the guitar...best of luck to you.

Very glad to hear that you're out and free, PS.

I'm another hospital hater, so I hear you.

@Eluxia: yeah, I've been doing a fair amount of research on it all, foudn a few books as well, though not the one I wanted. The consultant I have seems fairly on the ball with everything, was really amazing, so quite lucky in that regard, have a few questions I've to write out to bring with me to my appointment. My GP is pretty awesome as well, went to him as I needed a prescription and was having a chat about it for a few mins, he knows a lot more than I would have expected, plus, he suspected Crohns after only a week or two so I was quite lucky that I wasn't bounced around for ages with it.

@Moderan: Yeah, I was on high doses in the hosptial and high doses now being weened off it slowly, the consultant doesn't like using steroids too often so I'm hoping that it will help prevent loss of bone density. I'm on calcium suppliments and have increased my intake of dairy to prevent osteoperosis in the future. I know that it's mostly a concern with long term use but it's better to be safe than sorry. Gonna start some high impact exercise too to help prevent loss of bone density and to improve my general overall health.

@Hawke thanks I'm still all bruised it's starting to annoy me now, every time I go out I feel like a junkie/people are staring at my arms/back of my hand. Can't wait for them to fade! Really glad it was only just for a few days so theres that to be thankful for.