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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))
 
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.
 
Glad your finally home, now its time to get some proper rest in your own bed and surroundings
 
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!
 
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:
 
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
 
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?
 
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:
 
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: :eek: :eek2: :voodoo:
 
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:
 
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!:cool: And you look great too! ;)
 
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:
 
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'.
Click to expand...

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.
 
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. :)
 
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!:puke_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. :rolleyes:

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:
 
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: :eek:

fingerwound.jpg
 
While I'm at it, here are my other current battle scars :)

Brusied veins from last week:

arm_bruises_IVs.jpg


And the current state of my exploratory surgery in 2007:

surgery_scar_cu.jpg
 
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!
 
:lol: Started the scar thread and good ol' mike changed my thread title
for me so I'm not looking like a newbie anymore :)
 
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....
 
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 :)
 
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:
 
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))
 
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:
 
agreed with katiesue- advil is a killer on my belly, i know that for sure.
awesome at reducing fevers though :ybatty:
 
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....
 
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.
 
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.
 
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! :eek: :ybatty:
I had to share!
 
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.
 
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:
 
i'm more concerned about the antler mini:D

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

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


yoink!
 
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! :eek:
 
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?
 
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 - this post should be on the primal scream thread. Oh wait ... this is your thread.
How'd it happen? Is it fixable??
My condolences.
dead%20ipod.png
 
MINI Cooper said:
MY IPOD JUST DIED!!!!!!!!!! NOOOOOOOOOOooooooOOOOooooOOOoooo!!!!!!!!!
:angry-banghead:
Click to expand...

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

worked for my 1st generation ipod mini a few years ago.
 
eh. gave me an excuse to get an ipod touch for christmas :ycool:


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

normal_meandbaby.jpg


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:
mickbabyhappy2.jpg
 
OOO!! Who's the hot young nurse in the background of your pic, Mini??
He's so cute!!
Oh - and the baby too, haha.
 
he's adorable! I love the second pic with his half closed eye peeking out. he's soooooooo cute!
 
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:
 
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:
 
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))
 
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
 
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:
:(
 
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.
 
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:
 
Last edited:
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:D

good times and everyones happy!
 
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
 
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:
 
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...
 
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.

:)
 
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. :(
 
Hey cass sorry to hear yesterday was a sucky day for you, I hope today has been better!
 
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:
 
One order of Remi - coming right up. Would you like fries with that?

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

l_0294b99b0b6b41399a27d39721a30871.jpg
 
MINI Cooper said:
Yeah, well it's looking that way. The doc keeps telling me
Remicade has more side effects than Pred. I dunno.
Click to expand...


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
 
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:
 
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:
 
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:
 
yup, heard that stuff before as well.

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

normal_feedingbaby2.jpg


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

normal_baby3.jpg
 
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:
 
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!!
 
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???
Click to expand...

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.
 
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!
 
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:
 
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.
 
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. :(
 
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. :)
 
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
 
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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