# MINI Cooper's Blog



## MINI Cooper (Oct 17, 2008)

Hi everyone.
It's great that there is a forum for people coping with Crohn's.
One of the worst feelings is that you're alone in all of the suffering.

I have just been given a preliminary diagnosis of Crohn's Disease.
However, my doctors are still looking into the possibility that I have an 
adhesion due to my last surgery. I guess that is where I should start my story...

I have always had stomach problems. Cramping with diarrhea at least once
a week. But I dealt with it. But when I turned 25 all hell broke loose.
I felt the worst pain of my life. It literally felt like something had burst inside
of me. I couldn't have been more right...

5 trips to the ER later- one wrong diagnosis after another, the doctors finally
discovered a plum sized object at the end of my intestines. But instead of doing
immediate surgery to remove it, they wanted to put me on steroids for a week to
"see what happens". Luckily, I had my father there and he basically demanded
they do surgery instead. 

So, I had surgery. My appendix had ruptured, and developed a huge abcess around
itself which was causing me pain, but at least keeping me alive. The doctors removed
all of this. End of story? I wish...

By this time I had dropped to 80 pounds, and was released from the hospital 
weeks later hardly able to walk. But on antibiotics, I started to feel gradually better.

Sadly, a month later I started to get worse again. Ridiculous amounts of pain, and 
the inability to eat because I would vomit anything and everything up i tried to 
force down myself. I was basically painfully starving to death.

I dropped to 74 pounds. Finally, (after dealing with my hospital's member services
because of lack of help from the doctors) I was rushed to the hospital. My mom had
to wheel me in a wheelchair because I was unable to walk I was so frail. 

The hospital put me on TPN (total parental nutrition) where I had to feed myself
through a tube in my arm for 4 months- I got my weight back to 100 pounds.
(I normally am 110-115lbs.)

They also put me back on antibiotics which made things manageable again.
I was able to eat while on antibiotics, which was what was going to keep me alive.

I also had a colonoscopy, but they told me it looked fine. (but really wasn't)
LONG story short, my hospital couldn't figure out what my problem was.
Was it an adhesion from scar tissue after the surgery? They didn't know.
They left me on antibiotics and basically gave up on me. After an entire YEAR,
they were unable to give me any kind of diagnosis.

That's when I demanded I be transfered to Stanford to get a 'second opinion'.

After speaking to the doctor there, he believes I have Crohn's.
Apparently, there were results in my colonoscopy what were overlooked,
(colonic mucosa in my intestines, and a dilated intestine) and CT scans that 
were done poorly by my crappy original hospital. (who I will refrain from naming).

SO- now I am scheduled for another CT scan at Stanford, which should tell
if it is an adhesion in me that can be surgically removed or not.
Then I am having yet another colonoscopy, because my last one was
done poorly.

I am clinging to my shred of hope that it isn't Crohn's, but it isn't looking good.
I am currently living only because of 3 different kinds of antibiotics that I rotate
between.

Thanks for reading. It'c nice to have somewhere to vent! :smile: 

-Cassie


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## MaskdMarvl (Oct 17, 2008)

Good luck,  Best wishes! I hope life offers you the splender you deserve someday.


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## jed (Oct 17, 2008)

have you been hearing "_just remember theres always some one worse off than you_" alot?

or "_this wont hurt a bit_", or "_at least its not cancer_"

i got so bored of hearing things like that when i was going thru the diagnosis stage!

hullo cassie, and welcome to the forums.

apart from been able to take your blood or give you a colonoscopy, i think you'll find some of the people here to be the greatest source of knowledge on coping with Crohns (if you come back positive). i wont be much help to you medically, but hopefully i'll put a smile on your face from time to time.

best wishes,
Jed


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## art_nj (Oct 18, 2008)

Hi Cassie and welcome!  You've found a wonderful place for information and understanding.

I was just diagnosed this past week with Crohns (last Monday afternoon to be exact).  While being diagnosed with Crohns was upsetting, not knowing WHY I've been getting worse for the last 6 years was a nightmare!  I hid my pain and discomfort for years because I didn't want my family to think that I was exaggerting or unable to tolerate pain.  I am relieved however to FINALLY have an answer that makes sense!  I was told 6 years ago that I had IBS, but in my heart of hearts I knew I had something more than IBS.  I've been having abdominal pain and other issues for 18 long years.  I didn't start really going for tests until this past summer (sigmoidoscopy, blood work, colonoscopy, ct scan, small bowel series next week).  So yes, the constant testing sucks but if you can try to look at these test as a possibility of putting yourself into remission, it may make the testing a bit easier to tolerate.    

Good luck with your test and try to hang in there.  Hopefully things will start to look up for you.


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## MINI Cooper (Oct 22, 2008)

Thanks for the replies. 
The test results came back today. My Stanford doctor has officially diagnosed
me for Crohn's. 
:depressed: 

Actually, I'm a mixed bag of feelings right now...

Good news is that I finally have a NAME for my problem. Now I can start
treatments and hopefully get this pain and suffering in control before yet
another one of my organs bursts...

I'm looking forward to reading through this site, learn more about Crohn's
and get to know some people who understand what I'm going through.

cheers for now,
-CP


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## jed (Oct 23, 2008)

time for a silky 3 ply salute to you! official welcome to you!

and pen is right, really nothing sacred here.

and if your unsure about posting questions publically, there are many people here who will be more than happy to help you out via PM's.

sorry for your diagnosis, but there are worse things in the world.

jed.


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## soupdragon69 (Oct 23, 2008)

Hi Cassie,

Welcome to the happy throng! I have to say 50% of the battle is knowing what the heck is wrong. At least then you can start to fight back with the appropriate treatment and work to get your quality of life back finally.

Those were my first thoughts when diagnosed. Almost 2yrs down the line I am at last getting my head round my health problems (have others) and when I spoke to my GP yesterday he agreed that I have stopped beating myself up finally continually thinking I must do more or not doing enough. I ACCEPT now that I have good days and not great days, rest when I need to even when not happy about it because allows me to have a decent life in comparison to what I had before. Huge difference..

Know it will take you some time - maybe many months like me to get your head round things and work out what works for you. Know we are here to listen during your good and bad days. We will support and help in any way we can whether its to make you laugh or to prop you up Cassie.

Welcome again. Glad you found out the cause at last. Keeping asking both here and of your medical team now you have found someone that listens to you! 

Thinking of you ((hugs))


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## fenway1971 (Oct 26, 2008)

Hi Cassie,
Welcome.  Cheer up - you've got a great support group here.  Found this forum 2 months ago and it's been helpful for me.  Great place to vent and pick up advice on meds, diets, how to cope, etc.

Biggest thing you'll learn is that each person's experience with the disease differs.  Everyone also seems to be on different diets, different med treatments, etc.  But, if you sift through posts carefully, you'll find some great advice that will help you.

Stay positive - worrying will only make you feel worse.


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## teeny5 (Oct 26, 2008)

Hi Cassie.  Welcome to the forum.  It might not be what you wanted to hear that you have Crohn's, but know that this forum is a great place to get the support that you need.  It is nice to know that we are not all alone.  

I hope that they get you on a treatment that works for you quickly.  It has taken me since February to finally feel better.  It will happen, just might take some time.  For me it was a matter of finding the right mix of medications.   Good luck!


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## MINI Cooper (Oct 26, 2008)

Thanks everyone.
I'm having my second colonoscopy (this time by Stanford) tomorrow.
At the butt crack of dawn. Pun intended. (6:45AM)
They've had me on clear liquids all bloody weekend. It's not fun to say the least.

Why is it when I CAN eat, my tummy doesn't feel like eating, 
but when I'm NOT ALLOWED to eat, I feel like a nice juicy cheeseburger???
Life can be cruel...

And I start my laxative in 3 hours. Not looking forward.
I ALREADY feel like I'm on laxative :lol:


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## MINI Cooper (Oct 26, 2008)

Pen said:
			
		

> Hey Cassie, yes the prep is the worst part of the colonoscopy, gross.  When your bm are clear and no solids you've done your job. LOL.  Let us know how it goes ok?


Definitely. LEt the fun BEGIN! woohoo! :ybatty:


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## dayng1016 (Oct 26, 2008)

I'm right there with you Cassie, I'm having my second colonoscopy and upper endoscopy on Wednesday.  Starting my liquid diet tomorrow, but dreading the prep that they give to drink (can't remember the name of it) b/c it taste like pure salt water.  I'm hoping to find out if the crohn's has moved up, or if something else is going on in the upper stomach area or colon.  Good luck and let us know how it goes.


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## jed (Oct 26, 2008)

Pen said:
			
		

> When your bm are clear and no solids you've done your job. LOL.  Let us know how it goes ok?



ha ha ha ha ha ha, I LOVE THIS WEBSITE!!!!!!!!!!!!!!!!!

lol, tell us more


oh dear.

good luck cassie!


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## jed (Oct 26, 2008)

flirting? we asking about her poop? lol, nice pick up line in a bar..

hey do you come here often? tell me about your poop?

oh yeah, that sounds great, tell me more..


eeep!

i am so not a morning person today pen actually kinda grumpy i miss you in the game.

{{end of hijack, back to cassie now}}


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## Nancy Lee (Oct 26, 2008)

Hello Cassie and welcome to the Forum!   

I feel badly that your test came back positive for Crohn's,
but, it does feel good to be able to put a name to this nasty 'thing'!

Hope all goes well tomorrow, let us know the results.
You're probably well under way with the 'cleansing' now.  


While in the forum..
please relax, read, ask questions, and yes, even have fun here.  

Once again welcome!
Healing hugs~Nancy


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## sickranchero (Oct 27, 2008)

Hey Cassie, welcome to the forum.  Looks like you have been through a lot, actually everyone on here probably has.  So you're from the bay area, me too!  I work down the street from Stanford.  Good luck tomorrow, gotta love colonoscopies.  Been there done that!


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## Methofelis (Oct 27, 2008)

Gah! Your story sounds too much like mine (except mine took 20 years. Yikes.)

Good luck, lady! Just remember : Yes, it has a name. No, there isn't a cure... but at least now you know there are things you can do about it. And you have us! 

... As insane as we all are, mind. :ybatty:


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## MINI Cooper (Oct 28, 2008)

sickranchero said:
			
		

> I work down the street from Stanford.  Good luck tomorrow, gotta love colonoscopies.  Been there done that!


Hello fellow bay area person! :ycool: 

Now on to the colonoscopy:

Well, my first colonoscopy I was completely out. This time I was half awake
the whole time. I felt stuff going on in there and heard them talking!  :lol: 

They couldn't make it as far into the small intestines as they wanted, due to
my obstruction, but they did get some tissue samples.

The doc is starting me on lovely:yrolleyes:  predisone on wednesday. He's hoping I will
feel better after 5 days and then switch me to a milder drug.
I'll hope for the best...

In the meantime I will be starting my new diet. I'll be giving away all the food
in my pantry and buying all new stuff so there won't be any temptation around  

...stupid crohn's :voodoo:


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## soupdragon69 (Oct 28, 2008)

Glad the colonoscopy went well for you Cassie and you got some results and a plan forward even if it is the dreaded pred!

Hang in there honey. Things will improve albeit slowly.

Thinking of you.


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## MINI Cooper (Oct 29, 2008)

I went to a Crohn's support group meeting for the first time today.
Good God was it depressing! About 12 people there, half which have had
their colons removed. Not very comforting. The more I learn about
this disease, the more I hate it. :voodoo:


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## jed (Oct 29, 2008)

how many toilets were there?


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## danman (Oct 29, 2008)

"how many toilets were there?"


That's good, thats very good....


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## My Butt Hurts (Oct 29, 2008)

Hey MINI cooper, welcome to our club of talking about poop!  You started pred today?  I LOVE it!  I hope it's good to you.
Feel better.


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## MINI Cooper (Oct 30, 2008)

jed said:
			
		

> how many toilets were there?


That was my first thought. We all loaded up on imodium before we came, I guess
 

Still waiting for my 'OK' to start the prednisone from the Doc.
I picked up the prescription today though. Can't wait to hurry up and get
this started and feeling better!


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## jed (Oct 30, 2008)

loading up on immodium! ha, know that feeling!


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## MINI Cooper (Oct 31, 2008)

Officially started the prednisone today- 40mg

Had a nasty flare up last night. Vomitted my guts out  

So now Im actually feeling a lot better compared to this morning after
taking the meds. My doctor told me to email him on saturday to tell him
if I'm feeling  better.

I also have some Ambien to help me sleep, but so far I don't think I
will need it tonight.

...and so it begins. I hope to be in remission sooner than later. This flare up 
has lasted a year and a half now. It's just so cruel. :voodoo:


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## Han Shan (Oct 31, 2008)

I hope the prednisone works for you as well as it worked for me. When I started at the same 40mg dose, it was literally like a switch got thrown. I was pain free after three days of being on it.  I had been on Entocort, Pentasa, and 6-mp for a month prior to that with no improvement, so I tend to hold prednisone in high regard. I had some insomnia during the first two weeks on it, but I think that was also a result of being so damn happy to feel good again.


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## MINI Cooper (Oct 31, 2008)

wow. this stuff works fast!

Just yesterday I was bedridden, with horrible cramps and vomiting my
guts out.

Today, my appetite is back, very little cramping, and I actually feel
like moving around instead of lying in bed. 

So far, so good! :ycool:


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## fenway1971 (Nov 1, 2008)

Glad prednisone is working out.  Did doc say how long he's going to have you on it?  

I started at 40mg in beginning of Sept for 2 weeks, then 30mg for 2 weeks, then 25 for 2 weeks.  Now at 20.  Last week got my moonface.  Frankly, I can't wait to get off the stuff.  Works fast but side effects can get to you.


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## MINI Cooper (Nov 2, 2008)

Guess I'm having some issues. Started to get bad cramping again.
Doctor had me call him at home. Just got off the phone.

He thinks its my obstructions acting up so he's calling me
tomorrow morning. I may have to go into the hospital to get the prenisone
put in interveniously. Till then I'm supposed to be on a very low residue,
even clear liquid diet to avoid irritating my obstructions. 

So much for my new diet. It will have to wait until I get this stupid inflammation
down and blockages taken care of. I have to take baby steps and I forget that.
I just want to wake up and be well tomorrow. :voodoo: :ymad:


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## MINI Cooper (Nov 2, 2008)

Almost forgot, here is the video I made while I was on TPN
(after I dropped to 74 pounds)
This was before I knew I had Crohn's, but it gives a good look into
living with TPN, what you have to go through on a daily basis.

So if anyone wants to know anything and everything about TPN, here is
the video showing the entire daily procedure:

http://www.glovesandclover.com/tpn.html
(takes a bit to load, give it some time)


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## jed (Nov 2, 2008)

(cant watch vid here at work but saw some of your blog pages)
(just like to say)

woah, mini, your wedding..... AWESOME!!!!!!!!!!!!!!!!
holy crap, that is fricken cool.


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## MINI Cooper (Nov 8, 2008)

Bad update.

I'm really feeling down in the dumps today.
I 'm not doing well with the Prednisone, so my doctor
told me I need to have the steroids intravenously put in
and have an xray done to see if I'm obstructed. (which I  know I am still)

He said I can either go into ER tonight or wait until Monday
when I can contact my other hospital doctor. (I have 2 hospitals
right now battling over me) I know how CRAPPY ER can be, so
I'm going to try to hold out until Monday.

I HATE going into the hospital. And who knows how long I will be stuck
there. it depends if the stupid inflammation will go down.

LIFE SUCKS.
:depressed:


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## soupdragon69 (Nov 8, 2008)

Aww Cassie am so sorry you are having such a rough time honey again!

This is unfair!! The IV steroids should work faster for you I have to say but being admitted just sucks I totally agree. I was made to promise I would go in this weekend by my GP if my asthma got worse as he already has me at 60mg pred and high dose antibiotics. So far so good for me. Am just resting lots and my fiance is taking really good care of me, am so lucky to have him now.

Dont hang things out too long if you can help it though as sooner in the sooner sorted and home you know that...

Keep us posted when you can. Will be thinking of you alot. ((hugs))


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## CookieCat (Nov 8, 2008)

Hi Cassie, I am sorry you aren't doing well either. I hope the iv steroids help fast and you feel better soon. Your support has meant heaps to me the past couple of days.
Love from Cookie


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## MINI Cooper (Nov 10, 2008)

OK, off I go to ER now. :ybatty: Wish me luck.
Hopefully this won't take more than the day. I HATE being in the
hospital. ARRRGGGgggg. :ymad: 
(and no crohn's forum there)


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## CookieCat (Nov 10, 2008)

Good luck Cassie... as I said, I will be thinking of you from my hospital bed.

Hope you feel better soon.

Love,
Cookie


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## soupdragon69 (Nov 11, 2008)

Hope all goes well Cassie and you are back with us soon.

Just remember out of sight here is never out of mind.

We are with you in spirit!

((hugs))


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## MINI Cooper (Nov 11, 2008)

hEY! LOOK AT ME! I have internet access at the hospital!
My husband was able to rig it up for me.
Now I get to complain to you all while I'm stuck here :ylol2: 

It is sucking bad. They didn't let me eat ANYTHING today!
Yeah, lets take an already sick and underweight person and
STARVE THEM for no reason!

They say I can probably eat tomorrow. I say they had BETTER feed
me tomorrow, or all hell will break loose!

Already got some shots of prednisone. Got and IV with H20 drip.
Having to pee constantly. The usual fun.

They want to keep me here a couple days to make sure the stuff
is working, since obviously it wasn't working at home.

I doubt I will get any sleep tonight.
ALL I CAN THINK ABOUT IS FOOOOODD!!!!!

lol. I will admit to you all, and only you...
I found a fun size snickers bar in my purse and ATE IT
HEHEHEH. I feel so evil. I also wish I had MORE


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## jed (Nov 11, 2008)

ha ha, i got busted by my wife (and a nruse) with a bag of cheese and bacon ball chips when i was supposed to be fasting, LOL>

go mini!


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## soupdragon69 (Nov 11, 2008)

ha ha ha ha ha Cassie!

Sometimes the guilty treats are the most fun! You go girl!

Glad you can stay in touch.

((hugs))


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## MINI Cooper (Nov 11, 2008)

Well, got more sleep than I thought last night.
Dreamt about food though. :voodoo: 

Hard to sleep too much when they come in every few hours
to do vitals, take blood and change fluids for the IV. Not to mention
the constant peeing. Blah.

Can't wait for my doc to come in so I can start crying on cue for
them to FEED ME!

One day/night in the hospital and I already feel stinky and yucky and
wish I was home to take a nice long shower. I hate reeking of hospital.

Hopefully I will find out when my doc comes in how much longer they plan
on keeping me prisoner here. :ybatty:


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## CookieCat (Nov 11, 2008)

Hey Cassie,

Yeah I am hooked up to a drip too and fasting for this test tomorrow... not that I mind cos I am feeling pretty sick. 

Hope you don't have to be in for too long. Thinking of you.

Cookie


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## MINI Cooper (Nov 11, 2008)

Thanks, thinking of you too! Misery sure does love company :ycool:


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## CookieCat (Nov 12, 2008)

Yep it sure does! But what great company hey? 

As I said to Erin in another thread, it's like we are cyber hospital roomies! Lol....

I fasted ALL DAY today... only to be told they weren't going to do the test today afteall. And then it was too late to get a special diet tray from the kitchen, so I just had to pick out the bits I could eat. Grrrr....

At least I have a jug of water now though... aaaaaahhhh!!!! Water tastes so damn good when you have been dying of thirst all day!

How are you doing today? Hope you are feeling better. Feel free to share my 'Hospital' thread in the Treatment section if you like to exchange experiences and/or have a moan.

Love, 
Cookie


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## sheilag (Nov 12, 2008)

hi mini, hope you are feeling better, i have been reading all your post and i must say you are an inspiration, you and the others here have been through so much, my symptoms pale in significance, but i just wanted to know that i think you are all great here and hats off to you,

thinking of you,
sheila


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## soupdragon69 (Nov 12, 2008)

Hi Cassie,

Hope today has been a much better day for you honey. 

Keep your chin up. You know we are thinking of you..

((hugs))


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## MINI Cooper (Nov 12, 2008)

TODAY SUCKS SOOOO BAD!!!!!!!

They told me they were discharging me today. i was happy.
I got dressed, my husband came to pcik me up. All set to go, right?

My doctor comes in and says he spoke with my stanford doctor, and
he wants to keep me in at least one more day!!!!!!!!

AARGRRGG

back in the hospital robe and bed I go.

yes, I will admit, I had a very good sob. Nothing like tasting freedome only to
get the door slammed in front of your face again. My poor husband had
to leave me to go back to work while I was sitting there crying my eyes out.

I still need to speak to my Stanford doctor on the details as to why I need
another day. he seems to want to err on the side of caution since I was
so bad off, and intravenously has to be done here.

Life sucks. I want to go home. Now I have to take a shower here at the
hospital instead of home.

Oh, and they had to put ANOTHER IV in me since they removed my old
one since they thought I was leaving. Couldn't find a vein. HAd to bring
the picc nurse in here to use an ultra sound to find one.

At least I have internet again. My husband hooked it up before he left.

:depressed:


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## MINI Cooper (Nov 13, 2008)

UGH! I'm FINALLY home!!!!

What a miserable week.

So my levels have gone down since I've been given the Prednisone
intravenously. Now I will be weening off of it for the next 1-2 weeks
and have been given Azathioprine 50mg tablets to take afterward.

I came home to a FILTHY house. Even when I'm in the hospital my husband
just NEVER cleans. That was a bit disappointing. 

But I'm VERY glad to be able to sleep in my own bed tonight and not be 
woken up at 4am for blood work and 5 for medicine, and 5:30 for vitals 
and so on. There is just NO sleeping in the hospital.

First thing I did was take a nice shower. I feel human again. Except for
all the bruising and busted veins on my arms from IVs. oh well. Add 'em
to my collection. :ybatty:


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## jed (Nov 13, 2008)

MINI Cooper said:
			
		

> But I'm VERY glad to be able to sleep in my own bed tonight and not be
> woken up at 4am for blood work and 5 for medicine, and 5:30 for vitals
> and so on. There is just NO sleeping in the hospital.


and i dont know about your stay, but why the hell are night nurses the noisiest ones of all. and when they come in to check on someone, they turn the big lights on! use a bloody torch!  bah!


so glad to hear your home mini!

best wishs


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## MINI Cooper (Nov 13, 2008)

lol Really. 4am for blood work the woman says "GOOD MORNING!" and the high
beams go on, as if everyone is awake at that hour. :voodoo:


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## MINI Cooper (Nov 13, 2008)

Which reminds me, who has had Azathioprine before?
Anything I can expect from it?


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## katiesue1506 (Nov 13, 2008)

I have been, it usually takes 2-3 months to kick in. It made me have thinning hair and I think it made me tired... but I was also very anemic so I'm not sure about that. It didn't do anything for me I was on 150mg for 8 months. Its an immunosuppressant.


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## jed (Nov 13, 2008)

MINI Cooper said:
			
		

> lol Really. 4am for blood work the woman says "GOOD MORNING!" and the high
> beams go on, as if everyone is awake at that hour. :voodoo:


one of my worst things was that i was in a war vets hospital, most of them would goto sleep @ 7pm and night, and wake at 5am..... was very frustration.

i was aza, no side effects for me, but then it also didnt really do anything for me as well


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## RHOV (Nov 13, 2008)

i was on azathioprine too. it never really worked for me the way it was supposed to, but i did experience some of the side effects. about a quarter of my hair fell out. not so much that it was too noticeable, but you could tell it was a lot thinner. it also took a really long time for me to heal from cuts and bruises, which i seemed a lot more susceptible to. i'm a careless shaver, so whenever i sliced my leg on accident, the cut wouldn't heal, and then i'd accidentally cut it again and again... i made sure i always washed my hands and even carried around purell so i wouldn't get sick. and i didn't catch any colds or anything!


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## CookieCat (Nov 14, 2008)

:mademyday: Hey Cassie,

I am so happy to hear you managed to escape... gives me hope! 

Enjoy your bed and your showers and your uninterupted sleep - being in hospital makes you grateful for the littlest of things doesn't it?   I can relate to the sleep probs - I am feeling so bloody tired it's not funny. Last night, along with all the stuffing around with the PICC line and TPN, some of the nurses decided to have a bitch session outside my room. There is some sort of staff or directors room nearby and all the nurses seem to get together there and vent big time. Bad enough during the day  - but at 2am??!!! :eek2: I ask ya?

You're right about the night nurses having the loudest voices too Jed.... :ymad: But at least the vampire nurses here come at a more respectable time - gotta be grateful for small mercies don't ya? On the whole though the nurses and docs have been nice and I have THE best gastro doc - she is just fantastic.

Anyway Cas, just wanted to say rest up and recover after your little 'holiday'. Take care.

Cookie xx


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## MINI Cooper (Nov 14, 2008)

I woke up this morning with stabbing needle pains in my knees
down. I emailed my doc about it and am awaiting his response, but
do you think this is some side effect of the pred? or some crohns related
issue? I've never had this problem before, and a a bit worried


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## CookieCat (Nov 14, 2008)

Hi Cassie, yeah it could be down to the Pred (rotten drug but necesary!) but there is also a type of arthritis you can get with Crohns. Try hot or cold packs I find they do wonders for that sort of pain...  I usually like hot, but it depends.
I'm really aching from being in bed so much and wanted to get some exercises off of the physio but got told they dont want me using up unecessary energy.  So it's only the basic stretches to stop it. But that might also be a reason for your pains after spending a few days in bed.
Hope you feel better soon.


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## MINI Cooper (Nov 14, 2008)

CookieCat said:
			
		

> But that might also be a reason for your pains after spending a few days in bed.


I was thinking that too. I also feel light-headed. 
Arg. Where's a miracle cure drug when you need it?


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## MINI Cooper (Nov 16, 2008)

my photo from Saturday's event







In other news, I'm meeting with my doctor later this week to have
an 'educational meeting' about Crohn's and my next treatment plan.
Going to try to get the husband to go along with me. He hasn't met
my Stanford Doc yet.

As of right now, I'm slowly weening off of Prednisone, and starting on the
Azathioprine.


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## CookieCat (Nov 17, 2008)

Hey Mini, great photo! :thumleft: 

How are you feeling? A little less battered and bruised I hope.... 

I've got a lov-er-ly bruise from my PICC.... just about all colours of the rainbow! And yup... it's itchy!!!!!! :yrolleyes: 

Good luck with the meeting with your doc and with starting the Aza. Really hope it helps you.


----------



## MINI Cooper (Nov 17, 2008)

Still got a nasty bruise on my arm from the IV, but it's not where
people can really see it, so no biggie. Definitely doesn't compare
to the picc line I was walking around with before!

My appetite has increased lately. Must be the Pred.
All I feel like doing is snacking. I'm doing my best to stay away
from the sugar. :tongue:


----------



## jed (Nov 17, 2008)

that photo is hot.

nice one


----------



## GoJohnnyGo (Nov 17, 2008)

So Cassie, what would your "Bond Girl" name be?

Oh, and nice to see you out and about.


----------



## MINI Cooper (Nov 18, 2008)

I don't know!  

Any suggestions?


----------



## GoJohnnyGo (Nov 18, 2008)

Ivy (I.V.?) Plenty.


----------



## soupdragon69 (Nov 18, 2008)

Love the photo Cassie, you look great honey!

Glad you made it home too despite all the vampire marks etc. Have a couple of nice bruises myself from my remicade infusion today and they missed the vein. Men dont see house cleaning like we do lol He means well you know that ((hugs))

My GI planned to have me on remicade and aza but my liver function tests climbed, had nausea +++ and really bad aching muscles with it. Also added to my exhaustion. Works for some and not others like all the other meds we have Cassie. 

Think the new name suits her GJG! lol


----------



## MINI Cooper (Nov 18, 2008)

:lol: Nice one. Goes well with my picc line and IV scars-a-plenty.

Thanks Soup  

Having a bad day today. Bad cramps despite the pred and aza. Had to take
one of my mega pain pills. Very frustrating. 

Looks like I will have a nice list of questions for my doctor when I see 
him in a couple days. :yrolleyes:


----------



## soupdragon69 (Nov 18, 2008)

Go get him Mini (VROOOM VRROOOOMMM) lol

See if he then understands the principles of feeling like you been run over and flat as a dodo ;-)

There must have been something in the air today because by the time I got to the unit for my infusion the nurses pointed to the only chair left and it was one of those hard hospital chairs that doesnt recline - guess who was in tons of muscle, joint and bone pain this morning?? They managed to move me later because my remicade hadnt come from pharmacy so was 2hrs late starting and by then someone else had left. Hooray for blankets, pillows and being allowed to snuggle into them whilst waiting for painkillers to kick in is all I have to say!

Hope you are on the upturn Cassie. ((hugs))


----------



## sheilag (Nov 19, 2008)

hi cassie,

glad your out of the hospital and i hope things get a lot better for you, you deserve it, you look great in the pic by the way,

sheila


----------



## MINI Cooper (Nov 19, 2008)

Thanks guys. Seeing the doctor on Monday at noon for my 'educational session'
about Crohn's. I have lots of questions ready!


----------



## catfud (Nov 20, 2008)

Good luck!


----------



## MINI Cooper (Nov 20, 2008)

wow. craziness.

So Stanford calls  me this morning telling me I need yet another
referral from Kaiser in order to see my doctor again. lame.
So I was stressing out, because I really need to see my doctor,
and referrals take forever to get. 

Then my Stanford doctor calls me and says not to worry, if for
some reason I can't get the referral, he will se me OFF the records,
and off billing. wow! What a real human being! This made me feel better.

But he was not happy to hear I am doing bad again. he told me his
goal is to get me into remission and keep me OUT of the operating room.
My thoughts exactly. I don't want another operation.

He said he may be starting me on Asacol.
Has anyone taken Asacol? he told me it's a crapload of pills, but are
very effective. I'll obviously know more when I talk to him Monday...
but now I have MORE questions!


----------



## MINI Cooper (Nov 20, 2008)

crap. I also got word that I may have to go back into the dumb hospital
for more intravenous steroids.
NOOOOOOOOOoooooO!


----------



## jed (Nov 20, 2008)

isnt it spirit raising when a doctor shows some love and understanding. good for him!

i've tried Asacol (mesalazine), unfortunately it wasnt the drug for me, but i've got my fingers crossed that it'll be good for you

and back in hospital again? bah! you're gonna own your own bed there soon!


----------



## sheilag (Nov 20, 2008)

ahh cassie,

hope everything works out for you, 

sheila


----------



## CookieCat (Nov 21, 2008)

Hi Cassie, really hope you don't end up back in.... but you know you are in good company! 

Hopefully it won't be for long and they'll get you sorted out properly.

Lots of ((HUGS)). Thinking of you..... you'll get through this, just as I will.


----------



## catfud (Nov 21, 2008)

I've been on Asacol (mesalazine) too and it didn't do anything for me either but everyones different. Luckily it was one of the drugs that gave me the least side effects. I hope the Asacol is side effect free and helps to keep things in check for you!

CookieCat

You seem to be having trouble at the moment I have my fingers crossed for you and really hope you start feeling better soon.


----------



## MINI Cooper (Nov 21, 2008)

Well, here is the update.
Thanks for listening to me complain, everyone, btw  

One doctor wants me to go back in the hospital for more intravenous
steroids. (prednisone) The stay will be longer because he thinks he let me go too early
last time and there was still inflammation.

The second doctor is suggesting Remicade.

Here is where I stand so far.
The Prednisone, I am NOT happy with. When taken orally, they feel
like a placebo. They just don't do much of anything. When I had them
intravenously, they were working better, but I never felt 100% even after
4 days in the hospital with them. 

I have already been on Pred 3.5 weeks. WAY longer than I planned.
Still feeling crappy.
And if they aren't making me feel 100%, WHY should I take them
intravenously again??

So I'm leaning towards giving Remicade a try. I hear a lot of people here
have had success with that medicine. But I know nothing about it.

I have my doctor appointment on Monday. I told him that I would wait until
I  meet with him then to make my decision. I was being pressured
to be admitted into the hospital this morning, but I don't want to rush
myself into a decision like that.

I'm still not sure what to do. I don't want my desire to not be in the hospital
to make me make the wrong decision. I will suck it up if more Prednisone
is the answer- it's just that I'm having my serious doubts that it is...

I NEED HELP!!!!!


----------



## MINI Cooper (Nov 21, 2008)

::Sigh::
I'm going back to the hospital tonight.
One doctor says he'd like me to be there a week,
the other says just over the weekend.
I just want to be out before Thanksgiving.
I'm already missing my sister's baby shower and a board meeting
for my club that were this weekend.
:depressed: 
I'm also frustrated, and angry and pissed off, and want to scream...


----------



## soupdragon69 (Nov 22, 2008)

Hey Cassie,

This is so unfair! I understand where you are coming from on the pred front as this time I am on them 2wks and have been as high as 60mg orally. Went back up to 40mg from 20mg (weaning) last thurs and had yet another course of antibiotics started for 10 days. So yeah can rub thumbs with you on this.

I know how frustrated you are honey and being on steroids only compounds it doesnt it?

I would tend to agree with you that if it isnt helping then why have more? However, it could be the inflammation is taking longer to subside and just needs a little more to kick it into touch?

On the remicade front - remicade is what is known as an Anti TNF Alpha (the alpha bit is probably to do with something like there is more than one type of it so they will work through the alphabet if needed and go to beta etc) drug.

TNF = Tumour Necrosis Factor and through research they have discovered that folks with autoimmune disease produce too much of this. So crohns, rheumatoid that sort of thing...

Remicade is the brand name. Inflixmab is the generic name.

Remicade has a tiny tiny amount of mouse protein in it hence the risk of allergic reaction and why antihistamines and paracetamol are sometimes given beforehand.

The aim of the infusion is to "dampen down" the immune response of your body by reducing the TNF volume. Hence ANTI TNFa.

Remicade is usually chosen over the other biologics like Humira and Cimzia as it is the longest out on the market and has more research to back it up so far. The other two are both totally humanised forms but there is still the possibility of reaction just as with any drug we take. 

The other thought is some medics like to run remicade alongside something like Imuran or 6MP as there is research out that says both work well together to achieve remission. 

I am on methotrexate as you know for my arthritis and that is another drug that can be used in combo with remicade too.

Some folk find they feel tons better within hours of the iv and others like me took longer to respond (was 3rd infusion before I felt any better). Can make you feel very tired (but arent you that already so rest is important!) and I find I get a spell during mine where I get cold then pick up again.

Thats basically the bare bones of it Cassie that I can think of at the minute....

Does that help??

Hang in there honey. Keep fighting your corner. You know we are with you every step of the way... ((hugs))


----------



## CookieCat (Nov 23, 2008)

Hi Cassie, So sorry to hear you ended up back in.  You must be so frustrated and fed up with it all - I know the feeling. But like they are all saying to me, it's better to get things sorted out and feel better so that when you do get out you are up to doing all the things you want to do. It's not a good time of year to get stuck in hospital, is it?  

Know how you feel about the Pred too, but after being on it since my diagnosis I can say that it does work better for me at higher doses. I keep trying to drop it, but then I flare up too bad again and my dose goes straight back up. Now they are talking of long-term hydrocortisone injections because they are pretty sure I'm not really absorbing the oral pred. I can't come off the pred entirely - tried that and had some sort of crisis reaction because my body's stopped producing a hormone or something? Can't remember what its called atm, too tired. But I am hoping that they are gonna go ahead with one of the other treatments with me like remicade.... nearly everyone here seems to rave about it. I did try Aza and was sick as a dog because my liver didn't like it but they say remicade is not as bad on your liver? :confused2: 

Anyway I am rambling again. Combo of tiredness and iv steroids = one very crumbled-in-the-head Cookie! Take care Cas. I know you'll be fine.... you'll get there a day at a time.


----------



## MINI Cooper (Nov 23, 2008)

Thanks guys, and thanks for the info soup.
For the last day and a half I haven't had internet, which of
course has been driving me crazy. All I could think about was
this forum. :lol: 

I've been here since Friday night. Though I called ahead by like 4 hours, they
still had me sit in ER and wait for a room for another 4 hours. Didn't get into
my dumb room until midnight. And then I couldn't get internet access
because it was too far away from the starbucks down the street!
So yesterday  I requested a closer room to the street, and fortunately
 they obliged!

So here I am, Sunday. It is my sister's baby shower today which I planned
for her, and I won't be able to even be there. Missing out on life SUCKS.
But my doctor promised he would have me out for Thanksgiving. So at least
there's that.

Though I've been back on intravenous steroids since friday, I don't feel TOO
much better. And now I have headaches, which I usually never get.
And I need to produce a poop for them, but I can't seem to poop since I
had D on friday night.

Also, of course, they poked me 10 times before they could find a vein for the IV.
I have to take photos and show you my bruised up arms. I look like I was beat.
And my IV now doesn't look like it will last much longer. It's all red and bruised
at the site. I'm dreading going through another 10 pricks on my already used
up veins. UGH.

Like I said before, this is my last shot with the prednisione. If I don't start feeling
some significant improvement here that's IT. Remicade time.

Here I was yesterday trying to stay positive, and Jesse (husband) was running
around all day getting things done, then finally shows up here at 8 last night.
What does he tell me? "I feel overworked and unappreciated"
I of course on drugs and feeling bad in the hospital started to bawl like a baby
and so I just sent him home. Hopefully he will get sleep and feel better
 tomorrow...I can't take any negativity right now. Obviously I feel bad for him, 
but I'm clearly in no state to do anything about it.

Yes, and so life goes on in the hospital with or without me...:ybatty:


----------



## GoJohnnyGo (Nov 23, 2008)

Very trying circumstances for you Cassie. Don't worry about feeling upbeat if you're not.


----------



## CookieCat (Nov 23, 2008)

Hi Cass, sorry to hear it's been rough for you again. It sucks you had to wait so long in the ER when it was a planned admission! But at least you got your internet sorted eventually - yay for Starbucks! 

I find that IV steroids helps me more - but not really enough. Just takes the edge off it. Oral Pred doesnt do much at all unless on high doses when the only thing I notice is the lack of sleep. The theory about absorption issues makes sense though.

Hope they come up with some decent answers for you and you do start feeling better soon. Yeah, life does go on without us outside the hospital, and it is hard when it does too. I hate missing out on things too and its hard to watch people we love put themselves out so much because of us. But remember your hubby last time - didn't do much housework I seem to remember? Sounds like he is having a moan of his own. Not that its easy to watch someone you love get so sick and have to visit them in hospital, but there is another side too.

Hang in there Cass. Like I said, the time will pass for you, just as it will for me. Thinking of you.


----------



## catfud (Nov 24, 2008)

Hey Cass, I don't really know what to say, you sound like you are going through some tought times. I hope things pick up and get better for you.


----------



## MINI Cooper (Nov 25, 2008)

::sigh::
Just spoke with the doctor. Another day here at the hospital,
so looks like I have to wait until tomorrow to go home.
Time to go take another hospital shower...ugh.
:depressed:


----------



## catfud (Nov 26, 2008)

Have you made it home yet?


----------



## MINI Cooper (Nov 26, 2008)

Oh I suppose I will rant here too.

Its 4am
I can't sleep.

We just had a 'code rabid' or something one room down from me in the
hospital. Some guy was screaming out in a horrible fit of pain and all the
nurses went running over....

But I'm awake with Prednisone side effects of HORRIBLE heartburn,
joint pain and headaches. Fun times.

Plus they just came in to do my vitals. REALLY? 4am??? ugh.
The code rabid was at 3am, so whatever. Seems to be under control now.

WTF I feel just as bad with these side effects and there is NO sleeping
in the hospital. I WANNA GO HOME!!!!!!!!

They told me yesterday that I could go home tomorrow...err. today
technically now.
I hope they mean it. They lied last time I was here and made me come back.
I don't wanna be here during Thanksgiving. Especially now that I'm getting
side effects, I need to get off these IV steroids, my body won't be able
to take much more of this.

Plus the hospital just makes you mental. I'm also tired of people telling
me I need to speak to a counselor. That's what the forum is for! lol
::sigh:: But I am going slightly insane here....:ybatty:


----------



## CookieCat (Nov 26, 2008)

Hey Mini, I'll answer you here cos you seem to feel more 'at home' here LOL!

Huge (((HUGS))).... know what you mean about 'Code Rabid'. Thankfully my neighbour the 'moaning man' was transferred but there's another across the way who keeps calling out 'Oi!'... sounds like he's at  a football match! :yrolleyes: 

Yeh, like you I feel like my eyes are gonna fall out of my head with exhaustion. There is just NO REST here! Last night, in between hourly blood sugar tests ('by the pricking of my thumbs, something wicked this way comes!') and obs and pain, the nurses decided to play musical beds and shift all the damn furniture around at 5am. WTF???!!! Then to top it off, they did an inventory of supplies just outside of my room. D'oh!! 

Re. the heartburn... I'm very naughty there. I have my own supply. Plus own supply of backup pain meds (just OTC ones). I decided after my last admission for a PEG infection, when the doc took one look at my meds list and decided it wasn't 'worth his while' to write them up for me when I was only staying a couple of days (yes, I am serious!) that it was best to have a backup plan. 

I really, really hope you get out tomorrow Mini. I know all about the 'lies'... I had four months of it last year (pre-diagnoses, related to weight loss and liver abscess) - my doc kept saying 'We will aim for next week'. I gave up asking after a while. I haven't bothered asking here lately either, although I am getting a bit antsy now. I really want to get out for long enough to buy some xmas cards, organise some parcels and pack a few things to do. But I am still on continuous TPN - they won't even stop it for a shower cos my sugars drop too fast. I feel like I am tethered to the damn thing!

Just take it hour by hour Mini... I am keeping everything crossed for you that you escape tomorrow/today......:yrolleyes: If I was there, we could go hunt down the rabid dog and shoot him together!


----------



## MINI Cooper (Nov 26, 2008)

LOL

and yes, they are doing 'musical chairs' here too!
Sometimes I do feel like I am in a mental ward instead of a hospital.

That TPN is indeed a ball and chain. Even at home it will feel like that, sadly.
But home is DEFINITELY better.

And about the bringing in your own drugs...
I tried that last time and my dad wasn't so slick when the nurses came in.
I took a pain med of my own from home because I couldn't get a freakin'
nurse to come in and help me. When she finally came, she asked if I needed
a pain med and I said "uh, not right now"
Would have been fine, but my not-so-slick dad said "oh, she already took
one of her own."
THANKS DAD!
The nurse wasn't too happy, lets just say. But it is her own fault for
not showing up when I'm in horrible pain.

But had I known this heartburn would be here, I would have indeed snuck
in my own meds again. oh well.


----------



## catfud (Nov 26, 2008)

some silly jokes to hopefulyl give you two a quick giggle...

-----------------------------------------------------------------

---- Farting All The Time ----

Doctor, "What seems to be the problem?"

Patient, "Doc, I've got the farts. I mean I fart all the time,"

The Doctor nods, "Hmm."

Patient, "My farts do not stink and you can't hear them. It's just that I fart all the time. Look, we've been talking here for about 10 minutes and I've farted five times. You didn't hear them and you don't smell them, do you?"
"Hmm," says the Doctor,

He picks up his pad and writes out a prescription.

The patient is thrilled "Great doc. This prescription, will it really clear up my farts?"

"No," sighs the Doctor, "The prescription is to clear your sinuses. Next week I want you back here for a hearing test." 

-----------------------------------------------------------------

---- Revenge Is Sweet ----

There once was an old couple who had been married for thirty years.

Every morning the old boy would wake up and give off an enormous fart, much to his long suffering wife's annoyance.

"You'll fart your guts out one of these days," she always complained.

After a particularly bad week the wife decided to have her revenge and got up early, placing some turkey giblets in the bed next to the old boy's arse.

While making breakfast downstairs she heard his usual morning fart reverberate through the floorboards followed by a scream.

Twenty minutes later a rather shaken man came downstairs.

"You was right all along Missus," the old man says, "I finally did fart my guts out, but by the grace of God, and these two fingers, I managed to push 'em back in!"


----------



## MINI Cooper (Nov 26, 2008)

EEEEEEEEWEWWWWW!!!!
:lol: 
Thanks for that.


----------



## CookieCat (Nov 26, 2008)

:ylol2: :ylol2: :ylol2:  Catfud, those were great..... loved 'em!!!

Mini, hope  you finally managed some sleep. I did and feel heaps better for it.  And hopefully, today is 'escape from colditz' day!


----------



## soupdragon69 (Nov 26, 2008)

Absolutely priceless Lee!! Nearly needed to nebulise with those! 

Really needed the laugh. Well done that man!!

Cassie,

Fingers crossed for you getting home! Seems like we are swapping places in the coming hours.....


----------



## MINI Cooper (Nov 26, 2008)

*Thanksgiving will be good*

wow.  2 weeks in the hospital later, (with a 3 day break inbetween)
can really make you start to go crazy.

But I am finally home.

Ate some food, took a real shower, pooped in my own toilet,
then fell asleep by the fireplace with the sound of the rain outside and
my nasty hospital clothes and pillow cricling around in the washing machine.  

My arms are black and blue from needles. it really looks like Jesse beat  
me or something, I'm going to have to keep the arms covered for a while! :lol: 

The man who was screaming death screams at 3am this morning was not
in his room anymore. I hope he is OK, but it didn't sound good.
It really reminded me of my last surgery and how much pain I was in.
Memories I didn't enjoy recalling. I swear there is nothing sane or comfortable
about the hospital.

I will be taking my own freakin' antacids now for my heartburn.
I am still on 60 mg oral Prednisone and 50 mg of the Azathioprine.
Also got more Darvacet for the pain.

My doctor assured me this time I have definitely' DONE MY TIME.'
So if I get crappy again, there will be no going back to the hospital for
more Pred. Next will be Remicade for sure. That made me feel better.
Another hospital trip and I am going to go mental for sure. I mean, really-
How many times have I had hospital stays in the last year? 5? UGH.
I NEED remission!!!!!!


----------



## My Butt Hurts (Nov 26, 2008)

Glad you're home Mini.  Nothin' like poopin' in your own toilet!
So my question is - why don't you start Remi now, instead of waiting to feel like you need to be the hospital again?  I don't think a wait and see approach is good for someone who has been in and out of the hospital. 
Glad you're home!


----------



## GoJohnnyGo (Nov 26, 2008)

Glad to hear you've been "sprung" from "the joint."

Run free, Cassie! Run free!


----------



## MINI Cooper (Nov 26, 2008)

Thanks guys!
I dunno MBH, doctors orders. No Remicade yet.


----------



## fenway1971 (Nov 26, 2008)

Happy Thanksgiving, all.

Cassie - I don't know what to offer other than virtual hugs.  Hang in there.  This disease gets the best of us at times, but it also makes us stronger.  I wish you well.


----------



## soupdragon69 (Nov 27, 2008)

Yay she escaped! 

Vroom Vroom! lol

Am soooo pleased you got home Cassie. Odd about the remicade too as MBH says..

Time will tell. Enjoy the freedom and snuggles in your own bed 

((hugs))


----------



## kello82 (Nov 27, 2008)

welcome home mini!

glad to hear that youre doing well enough to go home. i agree with the others though, the remicade should start now!
but only the doc can decide that i guess.

anyways, get some good sleep now! you need it after bad hospital sleeps.


----------



## catfud (Nov 27, 2008)

Glad your finally home, now its time to get some proper rest in your own bed and surroundings


----------



## CookieCat (Nov 27, 2008)

YIPPEEE!!!!! :biggrin: 

So glad to hear you got home Cass! And in time for the holiday too! You go, girl!:thumleft: 

Enjoy your creature comforts hun... I know how much hospital stays make you appreciate the little things in life. My Mom brought me in some ice last night to put in my water pitcher - oooh, coold water.... yummmm!!!!! It was as delicious as drinking from a fresh mountain spring! :ytongue: 

I am glad your doc has said this is the last go too before Remi. At least you don't have to worry about being dragged in yet again.

Rest up and recover now and let Jesse look after you.... you've earned the break LOL!


----------



## MINI Cooper (Nov 27, 2008)

It's 3am again. I'm in TOO MUCH PAIN to sleep!
WTF?

My knees feel like someone is constantly stabbing them!
This happened last time I got home after IV steroids, but this time
is much more painful. I hope it doesn't last longer, too.
My pain pill isn't even doing much. I don't know what to do.

I'm angry I had to be on IV steroids this long. Now my body is rebelling.
I'm angry, tired, frustrated, and in PAIN. AAARRRRRrrrgggggg!!!! :ymad:


----------



## soupdragon69 (Nov 27, 2008)

Ahhh Cassie hang in there it WILL pass!!!

Steroids are like marmite you love em/hate em - either way you just cant win with them!

Have you got any other painkillers that you could take for like a "layer" effect?? You know yourself the more tensed up you are the worse the pain is too... hot water bottle? heat pad? a cuddle?

Really really feel for you honey.. sending you leprechaun ((((hugs)))) and hoping things improve soon


----------



## CookieCat (Nov 27, 2008)

Hey Cass, I find my heatpack is my best buddy at times like that... works wonders for the old bone pain. 

As Jan says, it _will _pass like everything else. I know it's hard but try and concentrate on the good things about being at home. At least you don't have to listen to death moans tonight! I've got a woman down the way who is screaming like someone possessed.... oh yay! Exorcist springs to mind....

I dont mean to say you dont have a right to feel sorry for yourself, but it does help me to think on the positives when I am down and in pain. Sending you huge hugs to tide you over. At least you know this is the last time hey?


----------



## MINI Cooper (Nov 27, 2008)

I am back from the family Thanksgiving event. Got there at 12 stayed till about 4.
Longer than I thought I would last.

My joint pain eventually subsided with, I won't lie, A LOT of painkillers.
I was in a foggy daze most of the day.
I basically ate, then passed out on the couch. Everyone was very understanding.
Eventually my heartburn, joint pain and some nausea set in, so I had Jesse
drive me back home where I was finally able to pass out and get a few hours of 
MUCH needed sleep. 

I Do have some good unrelated news! I came home to find my new issue 
of MC2 MINI Magazine in my mailbox:
http://www.mc2magazine.com/Welcome_to_MC2_Magazine.cfm

And guess who is in it??? Your truly! My car has an excellent shot inside,
as well as me and Jesse in another photo. I will scan them in and show you
all later when I'm feeling better.  
I have had my own photos published there in the past, but it is nice
being actually IN a photo for once! :ycool:


----------



## MINI Cooper (Nov 28, 2008)

OMG

3Am.....AGAIN.

Excruciating knee stabbing pain. :voodoo: 

I was having a nightmare. I was in a restaurant and no one was coming to
take my order. I got frustrated and left. it was dark and I could barely find my car.
When I started it, something was wrong and I started crashing into everything.
Then I got out, found a bike, started riding it, then the seat fell off! Finally,
I felt the knee pain and woke up.

Pain meds are doing nothing. I soaked in the tub, helped for a bit but now
it is back. I'm at a loss here. Just how long does this IV Pred aftermath go on???
Am I ever going to e able to sleep again??????
Am I going to have chronic knee pain forever????
:yrolleyes: :ybatty: :ymad:  :eek2: :voodoo:


----------



## MINI Cooper (Nov 28, 2008)

Thanks for all your kind words. Morning came and I am feeling better again.
But I am scared to death what tonight will bring. Will I get those horrible pains again?
None of my GIs have got back to me. Doesn't help that it's a holiday weekend.
I feel left in the dark. I need my sleep! :ybatty:


----------



## MINI Cooper (Nov 28, 2008)

On a happier note, I posted the photos I scanned from the magazine
to the photography thread


----------



## CookieCat (Nov 28, 2008)

Hey Cassie, good to hear you got thru the night. I know how long and hard the nights can be when you are in pain and just desperate to sleep but can't. Makes coping with it all so much harder.  

I'm really sorry if I didn't seem sympathetic in my last post. I didn't mean to come across that way if I did. I just meant that sometimes it helps by trying real hard to focus on the good things and take your mind off the bad. Hard to do tho' I know, and sometimes we just give into it.

Keep up with those heat packs and keep your joints warm. The side-effects will pass like everything else. I wonder if there is some anti-inflam. gel or Deep heat type thing you can get OTC that might help? 

Love the pics btw. Not into flashy cars... but cars with character are cool! And you look great too!


----------



## MINI Cooper (Nov 28, 2008)

No, you didn't seem insensitive! Insensitive were my family
visitors today who brushed off my excruciating knee pain that kept
me up all night crying my eyes out as 'a little arthritis'.
I wanted to scream at them that they didn't understand, but I was
too dang tired from lack of sleep. Plus my husband was awake with me
the whole time feeling helpless and he completely understands, at least.
Im not one to cry out loud in pain very often. I hate it when things get
the best of me. it makes me angry :ymad:


----------



## CookieCat (Nov 29, 2008)

MINI Cooper said:
			
		

> No, you didn't seem insensitive! Insensitive were my family
> visitors today who brushed off my excruciating knee pain that kept
> me up all night crying my eyes out as 'a little arthritis'.


I'm glad you understood where I was coming from. And yeh, I know all about family being insensitive. Although my folks are great in a lot of ways, there are times when they just don't think things through. Like having a hoard of grandkids around when I am feeling really unwell. I love the kids, but when I am sick I can't cope with them very well and they take over the whole house, so there is nothing I can do except stay in bed all day. :yfrown: Makes me even more miserable.  At least if they weren't there I could go and sit on the sofa for a while and try to take my mind off things by watching TV or a movie.

My Dad brought my nephews in to visit today which was great - really cheered me up. :thumleft: But it ended up totally wiping me out for the rest of the day and I had to zonk out on painkillers to get on top of things again. :yrolleyes:  Even just sitting up for that long was hard. My littlest nephew (4 yrs) was really concerned about the PICC line, but when I said that it was giving me energy to get well again he said, "Oh good then you wont always be so tired and sleep all the time!" Ain't that sweet? Gave me a much needed boost to stick this out. :wub:

Hope your bone/joint pain is a little easier tonight. Remember to keep warm - both with heat packs and also think of us all out here in cyberspace sending you warm healing hugs to make it better.  It will pass Cassie. Always does, hey? Its just riding those bad times thru.


----------



## MINI Cooper (Nov 29, 2008)

Well, no joint pain lat night! woo! But HORRIBLE heartburn.
Can't have just one night without pain, can I?
So I drowned myself in mylanta and pepto bismol and was able
to get some sleep for the most part. Joints are a bit achy now that
I am awake, but NOTHING compared to the horrific pain before.
achy, I can do. Stabbing, rip-your-knee out pain, I can't do.

Still can't get a hold of my freakin' doctors. I love how they just leave
you during that critical transition time when you're riddled with unwanted
side effects. So annoying. Depending on how I feel, which hopefully is
better, I am going to try to get some fresh air today. 

My tortoise is waking up,
better go put him outside.


----------



## CookieCat (Nov 29, 2008)

Glad to hear the pain is settling! Fantastic news....

Know all about the heartburn though. Just woke up with that lovely acid feeling coming up my throat... yeurk!uke_r:  I eat Mylanta like candy!

And yeh, the pain gets  you down doesn't it? I feel like I am being attacked at every level sometimes..... that's when I really don't cope. And I end up feeling like I never stop moaning, there is always something wrong.. so I dont say anything at all and no one realizes how bad it is. My mom didn't have any idea how much pain I've been in before I ended up in here, although she did notice I was pale and losing weight and didn't have any energy. Which goes to show something, cos she'd normally not even notice that much. 

But the heartburn will pass too Mini. Better days are ahead... I can feel it in my bones! (well, all this pain has gotta have some message behind it is what I think!):ylol2:


----------



## MINI Cooper (Nov 30, 2008)

So I got this wound on my finger over a week ago now.
yesterday it started turning green and hurting, so i decided to
prick it open. Good idea, because pus came out and now it
doesn't hurt anymore. gross, I know, but LOOOK AT THIS!
I have a Superman symbol on my finger!!!! :lol: :ylol2:


----------



## MINI Cooper (Nov 30, 2008)

While I'm at it, here are my other current battle scars  

Brusied veins from last week:







And the current state of my exploratory surgery in 2007:


----------



## Agent X20 (Nov 30, 2008)

Mini... could this be the start of a new "show us your battle scars" thread? Jed has already got in with his mightily stapled frontage on a different thread.
I could take a pic of the scar from my hip operation... but it's getting close to Christmas and people might think I'm selling turkeys!
Congrats, by the way... this must be the longest running "I'm new here" thread of all time!


----------



## MINI Cooper (Nov 30, 2008)

:lol: Started the scar thread and good ol' mike changed my thread title
for me so I'm not looking like a newbie anymore


----------



## MINI Cooper (Dec 1, 2008)

*Update*

It has officially been 5 weeks on Prednisone. 
10 days of which I was given it intravenously.

My symptoms/side effects thus far:

Orally 60mg: 
•Nothing,  maybe a little more hungry.

After intravenous and now orally 60mg:

•Horrible stabbing knee pain for 3 days.
•Continued arthritic pain in knees. I feel like an old woman.
•Bad heartburn/indigestion
•Not healing from bruises/cuts. They just change color.
•Moonface? I think I have it now, because I have dropped a lot of weight again,
and my face should look like a corpse by now, but it looks 'normal'
which is probably moonface to my benefit. lol The rest of my body is starting
to look too skinny again. I am 90 pounds. I could sit and eat 100 cheeseburgers
and not gain a thing. It's ridiculous. No absorption going on.

Benefits:
•Crohn's cramping has subsided a lot.
•Very minimal bloating now. I actually have a flat tummy sometimes- ha!
•Pooping is regular and solid.

Also taking 2 50 mg tabs of Azathioprine still. Not sure what that is or isn't doing.

Still waiting for either of my GIs to respond. When is my dose decreasing?
Why are the ignoring my side effects? A bit frustrating. Didn't think
I'd be on Pred this high dosage for this long....


----------



## kello82 (Dec 1, 2008)

oo nice bruises! i have a lovely one myself atm. gotta love em when they look like rainbows.

sorry youre on so much pred for so long  that is such a long list of problems for one little drug. are you on any med for the heartburn stuff? ive been on prevacid since i was last on steroids like 2 years ago and it works like magic for me.
i know you said you were having trouble getting in contact with your doc, i think you can get some OTC stuff thats pretty close as well- Pepcid, i think? at least youd have one less thing that hurts!

hope things start lookin up for you Mini


----------



## MINI Cooper (Dec 2, 2008)

Well, I wrote an email to my two GIs telling them I don't appreciate
being left in the dark about what is going on and all these side effects
I have been getting, the weight I'm losing, etc. etc.

The kaiser doctor responded first so far. What did he say?
Basically: 'you chose the other doctor's advice, so talk to him.'

He's trying to wash his hands of the situation and put the load on
the Stanford doctor. I expected this of him. Seems he forgot that I chose
HIS path first and that nearly led me to an early grave back in March.
So easily people forget! :ymad: 

So now I wait to hear from the Stanford doctor.
This should be interesting....:yrolleyes:


----------



## MINI Cooper (Dec 2, 2008)

Oh, and my bruise on my left arm looks WORSE now:


----------



## Agent X20 (Dec 2, 2008)

That should be on the battlescars thread!
(Thread Police)


----------



## soupdragon69 (Dec 2, 2008)

Aww Cassie I am sorry you have a prat of a doc but at least you are better off without him. Let him scuttle off with his tail between his legs he isnt worth the energy or the breath!

That was how I felt about the Consultant that saw me when I was in hospital last Friday. He was the same and it was the first time we met and he had already decided and wasnt prepared to listen.

Like you I did a "letter" of sorts for my gastro consultant today. He saw me before my colonoscopy and agreed he would take the time to read it and see what he could come up with for the next time we meet in clinic in a few weeks time. I think it wont be til the new year but at least I have a base line now and he will understand how I feel.

I also gave him a list of questions to ponder that I feel only he can answer in relation to my Vit D absorption problems, whether I have an underlying metabolic problem (which he suggested 2yrs ago and he said he wanted to sort the crohns first and then reconsider it so I have raised it now), and also that I am fed up being told its IBS all the time because they dont have proof via biopsy its my crohns because I am always on ruddy steroids beforehand each time!

Will be interesting to see what happens for both of us Cassie. Hang in there honey. Can match you for bruises at the mo too... 

((hugs))


----------



## MINI Cooper (Dec 2, 2008)

ugh, I hate it when they say it's IBS. Until my recent Crohn's diagnosis, that's
what they always brushed my tummy pains off as. SO annoying!

Well, While I was getting some bloodwork done at the hospital, my Stanford
doctor called me to address my issues that I had emailed them both:

They agree my side effects are due to the Prednisone and not my Crohn's.
DUH! I told them I didn't have these issues before, but whatever....

They prescribed me some more heartburn drugs and told me to take advil if 
my knees act up again.

I already knew all of this, but needed to hear it from them. 

As for my weight loss, my doctor said as long as I can tolerate it, eat more
and take advantage of the holiday food that is around this time of year. :tongue: 
He actually told me to eat cookies. :lol: :yrolleyes:


----------



## katiesue1506 (Dec 2, 2008)

Hey mini... I'd stick to tylenol if I were you... Advil is bad on the tummy.


----------



## kello82 (Dec 3, 2008)

agreed with katiesue- advil is a killer on my belly, i know that for sure.
awesome at reducing fevers though :ybatty:


----------



## MINI Cooper (Dec 3, 2008)

Thanks for the advice guys! When I was having that pain, though, I would have
even taken vicadin which I'm allergic to at that point to stop the pain.

In other related news, Colt pointed out that my bruising shouldn't be getting
worse and I may have blood clot issues. I emailed my doctors. i will also
call them tomorrow because now I'm kind of freaking out....


----------



## MINI Cooper (Dec 3, 2008)

wow. So NOW my doctor gives a quick reply.

He said It doesn't look alarming.  If it was bleeding, the arm would be  
swelling up.  If the arm is getting larger or becoming more painful then it
would be a problem. So it's probably just a bruise that's taking for freakin' 
ever to heal. maybe I can sleep tonight after all. ha.


----------



## soupdragon69 (Dec 3, 2008)

Yeah unfortunately Cassie when on steroids it takes longer for bruising to come to a head and then heal up as it slows down the process overall...

Am glad they are at least answering you fast now and you can poke them into action more!

Hope you have a better day honey.


----------



## MINI Cooper (Dec 4, 2008)

OMG! Stress not helping the Crohn's!!!!
But luckily, today I was feeling a bit better...WAS being the key word.

My sister comes in and tells me she's cramping and bleeding.
She's 36 weeks pregnant. The nurse on the phone tells her she might
be going into labor!!!!!

So I rush her to the hospital. Turns out she's dilated, but not enough for
labor yet, but was told she could literally go into labor tonight or 2 weeks
from now. It's just up to her body. So if she starts feeling more crampy,
we'll be taking her in.

My insides are in knots now!  :ybatty: 
I had to share!


----------



## catfud (Dec 5, 2008)

ahhhhhhh the curse of stress! If there's one thing us crohnies don't need its dam stress! Hope you and your sister are doing ok.


----------



## MINI Cooper (Dec 5, 2008)

Well guys, I will post photos when I get back.
This morning, 2 AM, my sister's water broke! I am off to the hospital.
It is 7am now...I live at hospitals anyway. :yrolleyes:


----------



## kello82 (Dec 5, 2008)

best wishes for your sister as she delivers!

and for you too mini, dont stress out too much!


----------



## jed (Dec 5, 2008)

i'm more concerned about the antler mini

you know what i'm talking about, where's the pics of reindeer mini?????


(_p.s. best wishes to your sister, and hope you go OK with it all_)


----------



## My Butt Hurts (Dec 5, 2008)

WE WANT ANTLERS!!  WE WANT ANTLERS!!!!
lmao @ jed

Good luck to sis, although I think jed would WAY rather see antler pics than baby pics.

(wink)


----------



## jed (Dec 5, 2008)

ooooooor, baby with antlers!!!!!!!!!!!!!1

post post post post post!!!!!!!!!!!!!1!1!!one one one


yoink!


----------



## MINI Cooper (Dec 5, 2008)

Posted under 'Red Nosed MINI' under Anything Goes


----------



## MINI Cooper (Dec 6, 2008)

Ok, I'm bloody wasted.  

I feel like someone sucked out all my blood.
Too much has happened this week. I'm sooo drained.
I slept 10 hours last night and am still tired.

And when I got out of bed this morning Jesse found a dead spider
underneath me. Guess I killed it while I was sleeping! Gross!


----------



## MINI Cooper (Dec 8, 2008)

Well, i officially joined Take Steps in San Jose May 30th.
Here's to hoping I will be in remission by then! :yrolleyes: 


http://www.cctakesteps.org


----------



## jed (Dec 8, 2008)

hey! you're in america mini, that never clicked for me!

i always thought you'd be english with the mini.

how common are mini's in the USA?


----------



## jed (Dec 8, 2008)

p.s. i found the antler and nose kit for my KA as well


----------



## MINI Cooper (Dec 8, 2008)

Everyone thinks I'm English. I get asked here all the time.  

New MINIs are becoming more common around here, only because
no one can afford their gas guzzlers anymore. :yrolleyes: 

HA! Now you have to post photos of yours with the antlers! :ylol2:


----------



## MINI Cooper (Dec 8, 2008)

MY IPOD JUST DIED!!!!!!!!!! NOOOOOOOOOOooooooOOOOooooOOOoooo!!!!!!!!!
:angry-banghead:


----------



## My Butt Hurts (Dec 8, 2008)

Mini - this post should be on the primal scream thread.  Oh wait ... this is your thread.
How'd it happen?  Is it fixable??
My condolences.


----------



## drew_wymore (Dec 8, 2008)

MINI Cooper said:
			
		

> MY IPOD JUST DIED!!!!!!!!!! NOOOOOOOOOOooooooOOOOooooOOOoooo!!!!!!!!!
> :angry-banghead:


Mine was thrown by a 5 year old onto an airport floor once and I took it to the Apple store and they replaced it even though it was out of warranty. Worth a try =)


----------



## jed (Dec 8, 2008)

you can borrow mine


----------



## RHOV (Dec 8, 2008)

depending on the model, you can buy a replacement battery.

worked for my 1st generation ipod mini a few years ago.


----------



## MINI Cooper (Dec 8, 2008)

eh. gave me an excuse to get an ipod touch for christmas :ycool: 


other news: I GOT TO HOLD THE BABY TODAY!!!!!!!!!!!!!!!!







Check it out. nasty bruises still on my arms. No one said anything thank God.

I've never been a baby fan. But something about being blood related.
it's just too cute!!!!!!


My sis and her baby:


----------



## kromom1 (Dec 8, 2008)

Congratulations on the new niece or nephew, Mini - which is it, and what's the name?  

Lisa


----------



## MINI Cooper (Dec 8, 2008)

baby boy, Barrett
Thank you!


----------



## My Butt Hurts (Dec 8, 2008)

OOO!!  Who's the hot young nurse in the background of your pic, Mini??
He's so cute!!
Oh - and the baby too, haha.


----------



## RHOV (Dec 8, 2008)

he's adorable! I love the second pic with his half closed eye peeking out. he's soooooooo cute!


----------



## kello82 (Dec 9, 2008)

aww precious 

im not really a kid lover either, but hes a cutie


----------



## MINI Cooper (Dec 9, 2008)

My Butt Hurts said:
			
		

> OOO!!  Who's the hot young nurse in the background of your pic, Mini??
> He's so cute!!
> Oh - and the baby too, haha.



:lol: HELLOOOOOO NURSE!


----------



## MINI Cooper (Dec 10, 2008)

Just spoke with my doctor.
Decreasing Pred by 10mg every 2 weeks. So tomorrow I will be
down to 40mg.
I'm so ready for these side effects to GO AWAY! :ymad:


----------



## MINI Cooper (Dec 11, 2008)

I am having SUCH an UGLY day.
I feel like all the 'good parts' are shrinking to nothing, while
my face continues to puff up like a fat person.
:depressed:


----------



## soupdragon69 (Dec 11, 2008)

Hey Cassie,

Barrett, mum and auntie all look great as far as I am concerned!

Soooo know the "ugly" feeling too. Told my GP today I was fed up looking like a Weeble! Am gradually reducing by 5mg a week now and he has put me off work today for yet another 3wks to make me rest as am so shattered. 

Every time I decrease my pred I have 48-72hrs of fun with flu like symptoms and sweats and shakes then I level out and come right again for the next decrease in a few days after it.

Hang in there Cassie! We will both get there honey ((hugs))


----------



## kello82 (Dec 11, 2008)

ugh i feel for both of you guys 

mini all my good parts shrank too- what little butt/hips i had are completely gone, and i went down two bra sizes. bah! 

and soup i dealt with the same side effects as you upon withdrawal from the pred. like the flu every time.

hang in there girls, youll feel so much better when youre done


----------



## MINI Cooper (Dec 11, 2008)

Thanks girls. It helps to know someone has 'been there, done that' and come out OK.

I'm going to put a paper bag over my head and go grocery shopping now. :lol:


----------



## My Butt Hurts (Dec 11, 2008)

Good GOD!  Cut holes in the bag before you drive your reindeer.
Maybe I shouldn't say this - but just wait until you gain the weight back and it doesn't come back the same way you lost it.  Now THAT'S something to whine about!  Grrr.


----------



## MINI Cooper (Dec 11, 2008)

Noooooooooooo!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


----------



## MINI Cooper (Dec 12, 2008)

UGH!
WHY IS EVERYONE MAD AT ME?????

My best friend found some abandoned kittens and is keeping them
until she finds homes for them, but she is also keeping one kitten for herself.
She already left 2 cats of hers at her parent's house when she moved out on 
her own to a tiny little place. No room for cats, and she wants to move again
possibly overseas when her lease is out. bad time and place for kittens, not to
mention she is NEVER home because she works her arse off at Dreamworks 24/7.
I felt as her friend, compelled to tell her she shouldn't adopt cat(s) right now.
Now she thinks I'm not being supportive and is not talking to me. Super.

Then my husband tells me I'm giving him too much pressure with all the presents
I have under the tree, and he works 9 hours a day, and doesn't need pressure
to get me anything for Christmas.....

what the hell??? I'm not ASKING for anything! What am I supposed to do? Be
a scrooge myself and not celebrate Christmas so HE doesn't feel bad that he
has no time to get me a freakin' Christmas present???

I do ALL of the Christmas shopping by myself, including all of his family.
he doesn't have to worry about ANYONE to shop for but me. And now
he's making me feel guilty that I can't work right now. Like I'm not
contributing.

ARRGGGGGG!!!!!!
Sorry for the crazy vent, but I am going mental today.
BAH HUMBUG!!!! :ymad: :voodoo:


----------



## jed (Dec 12, 2008)

go get nitros fitted to your mini and tell hubby its his xmas present to you.

he no longer has to worry about your pressie, you get to drive stoopidly fast

good times and everyones happy!


----------



## MINI Cooper (Dec 13, 2008)

sounds like a plan


----------



## Sparky (Dec 13, 2008)

Wow Mini, just read right through this - you've had a really tough couple of months!!

RE: your husband saying you're putting him under pressure...my DH was and is a complete star whenever I have a bad patch.  Under normal circumstances, he's a workaholic who is rarely here (spends Monday - Thursday in Holland/Germany/London/wherever), leaving me at home with our 9 year old.

When I'm not coping, he still travels but does everything when he gets home to let me rest.  He holds me when I cry in pain, he tries to think of food to tempt me (I can eat anything apart from red meat, but I have real problems making myself eat as I'm almost never hungry), he makes our excuses when we can't go places with friends - he's a gem.

However...once I'm back to more like myself, he goes into a little tailspin, and I can almost guarantee that he will tell me that he's stressed and it's my fault.  It's always over something fairly trivial - me asking him when he'll be home, or what he wants for dinner for example.

I think it's a reaction to the calm strength he displays when I'm really out of sorts.  It's like his stress and anxiety over me need to come out somewhere, and he seizes on something completely unrelated to my health.

Just a thought, honey - I'd be equally frustrated in your shoes though, particularly if he's making you feel guilty that you can't work.  I work full time, but that's only doable because I work from home 4 days a week - on a bad day, I work from the depths of my duvet, in my PJ's!

You asked about Azathioprine ages ago - I was/am on it, having tried loads of other things.  I can't tolerate Pred AT ALL - psychotic episode last time I took it (no pain though, which was cool - sadly my behaviour was like PMT to the power of 1000, and that was really not cool).  Azathioprine works for me, but it takes ages - about 10 weeks to get real results unfortunately.  No side effects fro me other than any cuts taking aeons to heal.  As I'm klutzy, that's not great.

Hope you're having a better day today x


----------



## MINI Cooper (Dec 13, 2008)

Thanks Sparky!

yeah, rough times. I'm feeling better today, other than I woke up
with the runs   But there's ALWAYS something :lol: oh well.

My husband came around and felt bad that he had made me feel bad.
Probably just a bad moment for him at work and he lashed out at me. 
We're all human. I know this.

It just gets old after 2 years of being unable to take care of myself, watching
as life passes me by.

The Pred probably isn't helping with my emotions. :ylol2: :ymad: :ybatty: 

As for the Azathioprine, I think I've been on it for 4 weeks now. 
Pred side effects really getting me down in the dumps.
and I'm starting to think my bruises are never going to heal.

...maybe that's a psychological statement as well. :yrolleyes:


----------



## Sparky (Dec 13, 2008)

Pred is almost certainly NOT helping your emotions - I was a mess, even before it got to the truly nutso state I ended up in!

If you and your husband can talk about it, that's at least half the battle - he knows he upset you, you know why he behaved teh way he did - doesn't make it right or perfect, but makes it easier to deal with.

I know what you mean about feeling like life's passing you by - I do a reasonable impression of someone who has a life, but I look at the friends who've dropped away because I'm so unreliable, and the things I no longer attempt because I know that odds are I'll have to bail out at the last minute...it's not great, but what do you do?  Grit your teeth, tell yourself it'll be OK, and get on with it I guess.

There is always something - I currently feel like someone's sanded the nerves in my neck and shoulders, that's the only way I can describe it.  I've had as much paracetamol/codeine as I can take, currently not tolerating anti-inflammatories at all so no options there, don't get on with tramadol...so I'm awake at nearly 1.30 am, wondering what to do.  

I've done lots of shopping online, had a glass of wine, and nothing's taking the edge off enough to let me sleep.  Once I've dropped off, I'll be fine for 2-3 hours, which is enough to let me relax such that I can sleep properly, if that makes sense.

I just need to find that off switch...


----------



## catfud (Dec 17, 2008)

Pred totally screwed my head up I was having some really crazy bad patches on it my emotions where totally out of control. My pred is now down to 15mg a day and its only now im starting to have normal emotions. It sure is a relief, just gotta hang in there until you reach lower dosage.


----------



## MINI Cooper (Dec 17, 2008)

Maybe something I ate didn't agree wit me. But as picky as my tummy is, 
it could have been ANYTHING. I had a horrible fit of vomiting this morning.
Last night I was in horrible pain and just knew whatever was in my tummy
was refusing to digest. Sure enough, morning comes and I'm in the bathroom
for hours vomiting it all up. Luckily, I was able to get some soup down by
lunchtime so I could take my meds. Just hoping it all stays down.
Today has been SUCKY.


----------



## catfud (Dec 18, 2008)

Hey cass sorry to hear yesterday was a sucky day for you, I hope today has been better!


----------



## MINI Cooper (Dec 20, 2008)

Well, got my blood work back. ESR (inflammation) went up like crazy again.
it was a 24 last week, this week a 43. Doctor thinks it was because I got
sick the other day. So he wants me to hold off on tapering the Pred. :voodoo: 
This doesn't make me happy. 

I am due for another lab test after Christmas. If it hasn't gone down, then
we will go to Remicade. In the meantime, sticking with Pred and the 
Azathioprine gets increased another 50mg. He is also considering adding 
on Asacol. Just call me a druggy.  :ymad:


----------



## My Butt Hurts (Dec 20, 2008)

One order of Remi - coming right up.  Would you like fries with that?

You need something else Mini - Remi'll do ya' good.


----------



## MINI Cooper (Dec 20, 2008)

Yeah, well it's looking that way. The doc keeps telling me
Remicade has more side effects than Pred. I dunno.

In unrelated news, I got to feed the baby today!


----------



## RHOV (Dec 20, 2008)

MINI Cooper said:
			
		

> Yeah, well it's looking that way. The doc keeps telling me
> Remicade has more side effects than Pred. I dunno.



It might be more accurate to say that Remi has more POTENTIAL side effects than prednisone. most people who take prednisone experience side effects, while many people can go on remicade and not have any.

remicade is better long-term too.

just my 2 cents


----------



## drivinghercboy (Dec 21, 2008)

*Thanks Mini*

Thanks for the reply and you are very right of course things one day might get better for all of us but at the current time frame it seems like no end! I see too that you do not have it ver yeasy as well, i guess no one with this disease or similar will ever get it easy. You seem to be doing pretty well and staying upbeat about everything, i envy that.

Ray:smile:


----------



## drivinghercboy (Dec 21, 2008)

*Remicade*

I have had 6 rounds of remicade and it seems to keep things somewhat in check, the abscesses are few and far between but there are some little annoying factors that still keep coming around. Hot flashes, when those babies come i feel like a menopausal women, they are so very warm it is crazy. Remicade so far has been very good to me and hopefully others will say the same. I also heard from my last infusion that if Remicade does not work that Humiara is the next line of attack.

Be well
Ray:smile:


----------



## MINI Cooper (Dec 22, 2008)

Ok, this annoyed me. A friend of my husband sent him this message
when he was told I had Crohn's:

"Tell her not to sweat it. one of my coworkers lives (and lives well) with 
chrohn's disease. It's treatable for a lifetime. I'd never heard about it but 
have been through his trials/tribulations with it and it's no big deal. all 
the best to you guys."

NO BIG DEAL??? People need to know: if you don't have it, you don't understand!
Just because his friend may have a mild case, doesn't mean I'm not suffering.

ugh. So annoying. wether he meant good or not. :ymad:


----------



## jed (Dec 23, 2008)

yup, heard that stuff before as well.

how i'd love to hate that kind of crohns sometimes............


----------



## MINI Cooper (Dec 23, 2008)

Well, I have officially relapsed again. My horrible cramps bloating and gurgling
have all returned in full force and I am back to popping pain meds and curling
up in a ball and waiting for the pain to subside.

I emailed my doctor. Told him I was fed up with prednisone. So we'll
see if they will be switiching me to Remicade. I just want something
THAT WORKS!!!!

Regardless, Christmas is going to suck in the state I'm in. I may have to stay
home. Hopefully the family understands. I know my side will, but the husband's 
side is another matter. And with people like in the last post I posted....ugh.

I HATE BEING SICK ALL THE TIME!!!!!!!!!!!!!!
:ymad: :voodoo:


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## jed (Dec 23, 2008)

damn that sucks cooper!

so sorry to hear this


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## soupdragon69 (Dec 24, 2008)

Cassie am so sorry you are feeling rotten again. 

Hopefully curling up in your wee corner with hubby will help ease things and the rest of the family understands.

Will be thinking of you over the hols... ((hugs))


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## MINI Cooper (Dec 26, 2008)

Well, feeling slightly better, and ESR in the blood tests today went down from
last weeks test. Which doesn't help me in my case to switch to remicade.
But I still am the decision maker, and I don't think Prednisone after this long
is doing it for me. What's to stop me from flaring again if this happened while
on full doses of Pred already? And I can't stay on this crap forever!
:ybatty: 

In other news,
At my in laws, the FIRST thing my mother in law said to me was,
"wow, your face is sure fat from the Prednisone!"

"THANKS! YOU LOOK GREAT TOO! &*%$#*@!" I thought to myself sarcastically.

I mean, WHO SAYS SOMETHING LIKE THAT????
You don't just greet someone with 'wow, you're looking ugly today" which is
basically what she was saying!

UGH! :ymad: 

Like I needed to feel crappier about myself right now!


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## kello82 (Dec 27, 2008)

aw mini thats horrible! i cant believe she would say that 

i had this random lady come into the store where i work and ask me if i had just had my wisdom teeth out. (my cheeks are swollen from inflammation in my mouth, not pred though). i was like wow, thanks.

but still, shes your relative! a little thinking before speaking would be nice.

all i can offer is to know how good you feel once youre off and your face is back to normal. you will feel like a supermodel, i guarantee it! been there too many times.


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## MINI Cooper (Dec 30, 2008)

My doctor finally called me after his vacation.
I now have Asocol to add to my drug list, which seems to be ever growing.
He promised me that the Pred will come down soon. It had better. I'm
so annoyed with it.
So now I have to take 10 pills every morning, with 3 more at lunch
and 3 more at dinner. Am I a drugee yet?

I noticed my doctor had a cold. His voice was all scratchy and nose stuffed up.
For some reason I thought that was weird...as if doctors can't get sick. :lol: 

Still feeling crampy...but at least after 3 days of D, it seems to be back to
'normal' now...whatever normal is.

I was able to go sofa shopping today. My mother gave me money for my 'couch fund'
I may go back and get one tonight that I liked, depending on how I'm feeling.
And oh yes, I will be posting photos, like I do for everything. :ylol2:


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## soupdragon69 (Dec 31, 2008)

Glad your doc has come up with a plan Cassie even if it means more smarties to take! 

A couch fund is a good thing and its important too as you MUST be comfy!! 

Looking forward to the photos as always ((hugs))

Still thinking of you honey - hang in there.


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## MINI Cooper (Jan 1, 2009)

Took down the Christmas decor today...always depressing.
I ordered my sofa, but I have to wait 3 weeks to get it..bummer.
I did get to visit the baby today, which makes me feel better







Too freakin' cute. He's a great distraction from my pain.


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## MINI Cooper (Jan 3, 2009)

Talked to my other doctor today.
He said my blood tests looked better. Yeah, thanks. I can read blood tests, 
thank God, otherwise I'd of waited a over a week to hear that.

I got a letter in the mail from the lab saying they need to redo the tests.
No clue way. I asked him about that and he knew nothing.
I asked when I should start tapering the Pred again and he said to ask
the other doctor. 

But when I had talked to the other doctor, he told me to talk to this doctor.
So who the heck am I supposed to talk to??? No one wants me!
There is apparently no communication between the doctors right now.
I hate being the middle man. :ymad: 

And I'm annoyed that I have never been lower than 40mg of Pred for
9 weeks now. Over 2 freakin' months on high doses of Pred. :ybatty:


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## Sparky (Jan 3, 2009)

How very frustrating for you Mini   You don't need the hassle with your doctors not talking to each other!

As for the pred - I remember that, I was on high doses of pred for a long, long time as every time they tried to wean me off it my CD flared bigstyle.  I used to think that I'd rattle if anyone shook me, I was taking so many little pills!  And then tehre was the massive calcium supplement - what a nightmare that was, I could hardly swallow the bloody thing.

Chin up, chicken, it WILL get better!!


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## My Butt Hurts (Jan 3, 2009)

MINI Cooper said:
			
		

> But when I had talked to the other doctor, he told me to talk to this doctor.
> So who the heck am I supposed to talk to???


Mini,
What are the titles of the doctors? Maybe that will make it easier to figure out who should be telling you what?
At one point I was seeing my GP, a GI, a colo-rectal surgeon, and an endocrinologist all at the same time, but they were all in very good communication with each other.
I would think that in your case you should be seeing the GI the most. If they are both GIs figure out which one you like better maybe? And which one was gonna put you on the Remi?? Stick with him/her.


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## teeny5 (Jan 3, 2009)

That is annoying when your docs don't talk.  My GI does that to me sometimes telling me to ask my GP to do this or that.  Hello, you call him then.  Why do I have to be the middle man.  

Hope that things get better for you real soon.  Hopefully a new year and things will turn around.  

By the way the baby is soooo cute!


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## MINI Cooper (Jan 3, 2009)

Thanks guys.
They are both GIs. One is from Kaiser, the other Stanford.
I have a better relationship with the Stanford doctor, and he is equally
disappointed that my Kaiser GI isn't pulling his weight and taking
responsibility, but technically Kaiser is still my primary facility, despite
my referral to Stanford. SO I am stuck with having two GIs. Sometimes
it can be good, two different opinions, other times, like this one, it can
be frustrating. Hopefully it is just because they were out for the holidays
and lost track of things. Not that vacation is an excuse for losing track
of your patients, but...:yrolleyes:


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## kello82 (Jan 7, 2009)

is there any reason that you cant switch your primary care facility to be stanford? is it further from you? 

ive switched my primary GI quite a few times. from yale (45 mins away), to philly (3 hours), to boston (3 hours the other direction lol), to nyc ( 1 1/2 hours yay!)

the distance sucks, but it was completely worth it to get the better care. esp the switch to philly, they were very good to me. but then again ive always had mom and dad to worry about the driving and trips for me, so i guess it would be different for you.

just a suggestion. but i hope things get figured out! you dont need any extra stress right now.


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## MINI Cooper (Jan 9, 2009)

Talked with the doc today.
Getting my next blood test on wednesday. if the inflammation is still
down, I get to taper the Pred. If it's still high, we switch to Remicade. 
SO SICK OF PRED!

kello, I believe the cost to switch to Sanford from kaiser may be too great for
us right now, otherwise we probably would.


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## kello82 (Jan 9, 2009)

ohh i see. boo that sucks


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## MINI Cooper (Jan 11, 2009)

Took my iguana to the vet today.
Doc says he looks like a healthy 13 year old ig.
But since he's had kidney issues in the past, they took blood
and will call me with the results on Monday.

He did one pee in the car, but other than that, he was a very good
boy and got lots of compliments.


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## drivinghercboy (Jan 11, 2009)

*Hi*

Predisone is really a great drug, at first you will get this sudden burst of energy that will last for days and you will feel great. I still have bunch sitting in my medicine cabinet just waiting for them to say EAT ME!!! I am currently in the beginning of a nasty flare up with the whole fistuale thing getting ready to send me back to the hosptial. Intrevenous predisnone in the best, you might get a little chubby but honestly it is worth it.

See ya good luck
Ray


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## MINI Cooper (Jan 11, 2009)

I've been on Pred for 10 weeks. 2 weeks of that was thru IV.
Have had LOTS of side effects, neither of which are chubbiness or extra energy/insomnia.
Though I do have face bloat. It is different for everyone.


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## MINI Cooper (Jan 11, 2009)

oh, and January for the calendar is up. See the calendar thread.


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## kello82 (Jan 13, 2009)

mini how long do iggys live?

kello is kurios


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## MINI Cooper (Jan 13, 2009)

about 20 years in captivity. Mine, will live forever


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## MINI Cooper (Jan 14, 2009)

Did my weekly blood test today.
ESR was through the roof again. But I've felt worse...
The thing is I've had a cold for a week.
So can a cold make my ESR (inflammation) high?

FYI It was 62. Normal is 0-22. Last week is was high twenties.


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## MINI Cooper (Jan 14, 2009)

Doc called me tonight.
I start tapering Pred tomorrow FINALLY.
May also increase one of my other drugs, and if that doesn't
get my high inflammation down, then we will have no choice but 
to do Remicade.

UGH. Stupid Pred. I feel like I've suffered with these side effects for nothing.
:voodoo:


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## soupdragon69 (Jan 15, 2009)

Hope the taper goes well Cassie and that you get something sorted to help you more effectively soon!!

((hugs))


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## MINI Cooper (Jan 20, 2009)

::Sigh:: I'm feeling depressed. Weird things have been happening lately.
I'm stressing out. And my Crohn's doesn't appreciate the stress. Just needed to 
vent somewhere.

roar.


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## MINI Cooper (Jan 24, 2009)

Well, my sorry butt is going to Florida the second week of February.
I didn't want to go because I haven't been able to leave the toilet for more
than a few minutes at a time of late, but the husband already got plane tickets.

He's having a work convention and wants to use the few days beforehand as
a vacation. I'm stressing out about this. I feel like it might be the honeymoon
disaster all over again. I'm probably going to have to load up on drugs before
hand and just be constipated the whole time. Better that than needing to
run to the toilet if I'm stuck on a plane or something. 

I will also be tapering my Prednisone down to 20 that week. I'm hoping I 
don't flare up, otherwise things could get ugly. :ymad:


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## garygepner1 (Jan 30, 2009)

Wish you the best of luck with the trip to Florida, you have been thru so much already with everything kiddo. You deserve to get away with the hubby and not have to worry about getting sick. 
 Just watched your TPN video, wow, I really dont know what to say except that you are a very strong and determined woman and it hurt me to see such a young woman have to go thru that. It must of been hell at times. You must have a very loving and caring husband to go thru this all with you, my hats off to the man, good job.
 Have you tried medical marijuana thru any of this? If so did it work for you at all?
Just curious, some people consider it an "ILLEGAL DRUG" still, but if you ask me its a medical breakthrough in some cases or instances. It has worked for me so far.

 Sincerely and Respectfully, Gary


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## jed (Jan 30, 2009)

garygepner1 said:
			
		

> except that you are a very strong and determined woman


that she is.

mini ftw!


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## MINI Cooper (Jan 30, 2009)

aww thanks  

Everyone who lives with this dumb disease is a strong person in my book!

Well, tickets bought, reservations made. 
I will be loading up on Immodium. :ylol2: 

I will be learning how to wrangle a gator! Oh yes, there WILL be photos :ycool: 

Havent tried the marijuana route, though these days there isn't much
that I havent yet tried, save the worms up the butt thing. lol


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## soupdragon69 (Jan 30, 2009)

Hope you have a great time Mini and the guts behave having listened to the stern lecture you are going to give them!!

Looking forward to seeing the photos!


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## kello82 (Feb 10, 2009)

hope you are enjoying yourself in florida!
wrangle that gator good!


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## drew_wymore (Feb 10, 2009)

jed said:
			
		

> that she is.
> 
> mini ftw!


indeed


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## jed (Feb 10, 2009)

come down to aus and take on a salt water croc, then i'll be proud of you mini


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## MINI Cooper (Feb 12, 2009)

that is one BIG croc!!!!!
and yes, I do plan on visiting Australian crocs, but had to settle for the
gators and american crocs for the time being  

I just got back, and have 500..yes 500 photos to weed through and post,
so it will be a while, but I thought I'd post a few from Gatorland where I
got to wrestle the gator  














This guy is just as big as my Turk!






I also have video if the airboat ride where we ran into wild gators and will have to post
that when I get around to editing it.

I will be busy with photos and video for the next year.  :yrolleyes: 

My tummy didn't complain tooo much, but I was on Immodium the whole time
to prevent any accidents. I didn't think the gator would have appreciated an
accident :ylol2: Pretty exhausting, but so very glad Jesse made me go


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## jed (Feb 12, 2009)

so glad to hear it all went well Mini!

top photo = very cute


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## My Butt Hurts (Feb 12, 2009)

Glad you had fun and didn't run into any difficulties!  
OMG - 2nd pic?  One good lunge and you look like lunch!


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## teeny5 (Feb 13, 2009)

Sounds like a great trip!


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