Ow Ow Ow

[Brizzyce]

Alright, so this week I tapered down to 10mg prednisone from 50mg two months ago, and basically I feel like utter ****. I haven't slept for more than an hour at a time for the last week, my joints are killing me, and I think I've gone and constipated myself because I've been taking too many painkillers. My next GI appointment is a month away, two weeks after I will have run out of prednisone and will not be on any medication at all. I have called them about this several times and they told me they would call back to figure out a better appointment date, but so far they've pretty much been ignoring me.

Anyways, this morning I think I hit my breaking point. After waking up at 5am and soaking in the tub to try to relieve some of the pain, I've come to the conclusion that I won't be able to go to work today since my gut just hurts too badly. I HATE missing work because money is extremely tight right now but I physically wouldn't be able to do my job, so why bother even trying?

That's it for me for now. I feel a bit better I suppose, it's nice to have a place where we can just go on an unmitigated rant.

 

[Crohn's 35]

Sorry Brizzy, yes it is a side effect from Prednisone. Once you are down past 25mg it is like every symptom known to man surfaces. Short term use of Advil wont kill ya, you have to do something. Painkillers are not for a lifetime use. :hang: is there any way you can leave a message with your doctor, I do and sometimes he calls me. Yes it is rare they call but I am lucky with my current Gi. It cant hurt to try or get a closer appt?
Let us know.

 

[ChefShazzy]

Sorry to hear that, Bryce; Call your doctor's office back and explain the situation. If you can't get in to an earlier appointment, maybe your GI can at least renew your prescription of prednisone? Bump it back up for a few weeks and try tapering again? Yeah, you'll have to be on it a while longer but it will tide you over until you can finally get in to see your doc and get it all straightened out... Take good care of yourself, hope you feel better soon.

 

[Walt]

rough and tumble...

Hi B,
Sorry for your suffering.
I have not worked since Sept '09 due to illness, so I know how it can hurt your money on top of your guts.
When my Pred ran low, I called my GI's booker, and she called my pharmacy to refill my script, and
I got them quick and easy, one phone call.
Perhaps you can find a way to do the same?
You don't really require an appt, just a renewal of a current med.

Everyone knows it's dangerous to just stop Pred.
This should be no problem?

It's not like anyone is gonna abuse them, take them for fun, nor sell them in the back alley.

Sorry to report, I just weened off my first ride with Pred, it was rough getting on, it was rough being on,
it was rough getting off, and it is rough afterwards.(side effects can linger)
Just letting you know, that most of us know, and can relate.
Hang in there,
Walt

ps missing work, play, anything at all sucks, but sometimes we do haveta take our rest and heal. it's never easy.....

 

[Brizzyce]

Thanks for the support all. When I say I'm almost out of pred, I don't mean that I'm physically out of pills, I just mean that I will have completed my tapering schedule. I can get more pills easily, I just hate that I will be on zero medication with no pain relief in sight whilst waiting several weeks for my next GI appointment, at which point they may or may not be able to do anything for me. I suppose I could just keep taking the pred, but it's offering me such little relief from inflammation that I don't know if the joint pain is worth it at this point.

 

[Rebecca85]

Ask your GI if you can slow the taper, this is what they told me to do when they realised I would finish the pred before my appointment.

 

[Entchen]

Poor Bryce. Haven't tried prednisone, so no advice to offer, but want to send best wishes for the pain to go away soon.

 

[Brizzyce]

An update:

Last night around 7:00 pm it just got too unbearable so I went to the ER. I was given a bed in Emerg immediately which was nice, especially since I was there for the next 14 hours. At 9:00 this morning, after having not slept at all, they admitted me to the hospital, gave me another CT scan (probably pointless, but meh) and gave me a room upstairs. That's where I am now.

I'm told (fingers crossed) that they were able to book an operating room for TOMORROW where they will be able to do my colonoscopy under general anesthetic, but I'm a bit skeptical. I've also been told that a GI doc will be coming by to see me today, but the day is getting close to the end and so far they're a no show.

Either way, hooray for quality medical care for once! I'll let you guys know what happens.



EDIT: Oh yeah, the reason I've been waiting on a colonoscopy is that ever since my diagnosis, the docs have never been able to successfully biopsy my gut because the inflammation has been too high. I've been waiting months for them to be able to book an anesthesiologist and an operating room to do it under a general anesthetic.

 

[Astra]

Hey!
way to go Bryce!
it's the only way, I'm afraid, get to A&E and things get rushed thro.
I went really ill when I hit 10mg of Pred, so I upped it to 20mg and started again, maybe you could try that
hope all goes well with the scope, we're rooting for ya!
xxx

 

[Brizzyce]

Thanks Joan! The docs just came to wake me up from my lovely drug-induced sleep to tell me that they are indeed going to try to do the scope tomorrow, so I start my GoLytely this afternoon. It's not my favourite thing in the world but it beats sitting at home in pain waiting for them to call!

 

[Brizzyce]

Well, I had my colonoscopy today. I don't really feel like writing much about it, but my doctor just came by and said that he thinks that surgery is the only option. We were thinking about trying Remicade but the inflammation is too advanced and there's too much risk of infection so he wants to do a bowel resection. This sucks. I was only diagnosed a few months ago and I'm already losing part of my bowel. Will write more later.

 

[silver]

Awww that does suck, with any luck they won't have to resect much, take care and let us know how you get on!

Glad you finally got some decisive action there though, it could have been really serious if you'd waited much longer, silly silly red tape!

Take care :hug: