Crohns......the final frontier....
No wait, thats from something else
How about....
Crohn's the gift that keeps giving (wether you want it or not (odd my intestines just gurgled))
TAPERING PREDNISONE
So it was that time of the year again, time to taper the prednisone because my GI loves to try to get me down to what he considers a resonable level (ya know, saving my bones long term and all), his magic number is 10 mg daily.
So 6 months on 20 mg then another 3 months working down to 10 then 3 months of holy freaking hell of flare up city. And as a side note the other 9 months of 20 mg and tapering aint no party either, wont bother with the details, you all know the various daily crohns stuff as well as the side effects of the same daily drugs which barely keeep you moving, nuff said there.
So anyway, back to sick, back to the GI, back to throwing me into the emergency 30 mg for a week then back to 20 mg daily again, this is the....
6TH YEAR we have done this dance, I told him, Im done, no more tapering. Yes I care about my bones. but for the love of (throw in whatever works here for you) can we please stop the endless guinea pig suffering of endless different drugs and their side effects and tapering, tapering tapering......is there an uglier word.....
WEIRD TOOTH THING
So this year was bizzare in a way, this time coming down from pred to 10 mg I had the weirdest experience, one tooth started hurting.....
I thought, darn a cavity too, freaking lame, then another tooth a couple days later, then all my teeth, cold water and my toothpaste were starting to kill me, outta the blue, within a week the pain went from lame to WTH is going on. My Gi said, no way is it related to the Pred tapering. Then after he put me on the emergency 30 mg this week, my tetth no longer hurt anymore.....
This begs the question, are my teeth hurting from with tapering or is the Pred I'm taking masking a problem wiht my teeth, I just had them exrayed two years ago and they were fine, but who knows, I just dont beliee in coincidences.
GETTING A PREscriptION YOUR DOC WONT WRITE?
So after trying every nausea drug on the planet from zantac, to omerparozle, to rolaids, malox, zofran, reglan (picked up a lovely neuuro cns disease from thsi drug called tardive syndrome, alot like cerbral palsy, another nightmare) the list is way to long, the side effects can be horrific. the long term effects on the way digest, priceless.....
So after exaustive research on the web I found a drug called marinol, a synthetic drug made by a real pharmaceutical company, my hospital is Kaiser, they have the drug in there pharmacy, I spoke with the pharmacologist who assured me she does dispense the drug.
I'm not an idiot, it is synthetic thc and every Doctor I have spoke to has said in no uncertain terms and I quote "I do not prescribe (emphasis here, no joke) THAT drug." and then they will no longer discuss it.
I looked up this drug on askapatient.com, Im sure most of you know about this sight, real patients rate drugs. This drug was rated 84% successful for patients, yet there were only 29 reviews, as oposed to every anti killing depressant on the website which has hundreds if not more reviews, odd that doctors choose which drugs they will try and which they wont, despite the fact that they absolutely have to know that certain drugs they give you may cause irreversable damage to your brain, oragans or various other devastating bodily side effects.
So it begs the question, how do you get a Doctor to try something they are personaly opposed to as opposed to scientificly opposed to.
IRRABILITY AND ANGER DURRING FLARE UPS
What is with the nasty emotional crap that goes with a flare up, I get it, I'm sick, I whine, I don't want to hear anyone tell me "how to get bettter" or what they think I should do, or what they can do for me....
All these people do is love me and want to help, and I'm like "Back off with your creepy "Ill fix you mojo"". I should thank them and learn to be mroe ptient, yet I find it almost impossible to control my snappy little barbs and then I just feel like total crap for belittling those who love me the most, it can be a rather suicidal feeling while durring a flare up. I actually goto sleep when I place myself in these impossible situations because I simply cant deal with the fact that Im not as wonderful as I think I am and I wonder, how the hell does she stay with me, I don't know how I would stay with someone snapping on me randomly durring flare ups. Crazy woman loves me, whats wrong with her? (definite joke here, aint nothing wrong with her)
MOVING ONTO NEW SPECIALISTS
13 years now, multiple surgeries, endless drugs and now I moved to another part of town 5 mins from another Kaiser, so now all my old specialists are 1 hour away at the other kasier. So I finnaly got around to getting my neuro and gi to refer me, that was so fun, like pulling teeth. (no joke here)
So any advice, I am no stranger to switching specialists in the early years when I was seeking diagnosis, but now the diagnosis is done, its all about treating symptoms (yeah, Docs love that quote) So how do you win over a Doctor or do you even bother trying, is it important that you like your doctor or that your doctor like you ( this latter option seemms rather obvious)
Knowing what I do now as a Crohns veteran after all these years and seeing as many Doctors as I have, I can tell you they all have incredibly different personalities and often times I dont have the time to discover how to get in their heads to get a medical compromise that works. Most specialists are walking backward out the door as soon as they walk in the room to see you (only a slight exageration here).
So I suppose what I am asking here is, what is your approach when moving onto a new specialist?
Anyway, plenty of fun here if even temporary, pain with all I eat, losing lots of weight, endless D movements, you all no the drill. Its always temporary, flare ups I mean, wish I could say the same about the every day pain.
So there ya go, as promised, Usless blather, frankly, because I should come by here more and blather more, because while I poke fun at my own situation, It should be dualy noted that every post I read here makes me feel better in the sense that I am family, not the terror parts I read, those can make me cry, but the family part of these forums keeps me going in ways I cant explain, so I have to thank all of you for your "blather"
Cya guys Later
Jon