MINI Cooper's Blog

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

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

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

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.

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

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.

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))

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.

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!

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:

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?

Click to expand...

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

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.

Pen said:

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

Click to expand...

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

lol, tell us more


oh dear.

good luck cassie!

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}}

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

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!

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:

sickranchero said:

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

Click to expand...

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:

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.

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:

how many toilets were there?

"how many toilets were there?"


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

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.

jed said:

how many toilets were there?

Click to expand...

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!

loading up on immodium! ha, know that feeling!

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:

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.

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:

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.

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:

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)

(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.

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:

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))

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

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)

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

Hope you feel better soon.

Love,
Cookie

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))

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

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!

ha ha ha ha ha Cassie!

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

Glad you can stay in touch.

((hugs))

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:

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

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

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

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

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))

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:

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:

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.

Click to expand...

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

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:

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

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.

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:

Click to expand...

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

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!

: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

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

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.

CookieCat said:

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

Click to expand...

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

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.

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.

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:

that photo is hot.

nice one

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

Oh, and nice to see you out and about.

I don't know!

Any suggestions?

Ivy (I.V.?) Plenty.

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

: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:

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))

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

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

Good luck!

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!

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

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!

ahh cassie,

hope everything works out for you,

sheila

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.

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.

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!!!!!

::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...

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))

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.

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:

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

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.

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.

::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:

Have you made it home yet?

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:

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!

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.

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!"

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

: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!

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.....

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!!!!!!

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!

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

Run free, Cassie! Run free!

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

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.